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Diabetes Community Demand Access 4 All, to new life-changing flash glucose technology


  1. EMBARGEOD until WEDNESDAY 18TH APRIL 2018 at 12 noon

Equality 4 All petition printed and ready for presentation (credit to Grainne )

Diabetes Community demand access for all to new life-changing flash glucose technology

Petition signed by 19,000 people presented to TD’s

 

A petition presentation to TDs seeking to make the new flash glucose monitoring technology, the Freestyle Libre, available to all people with Type 1 diabetes, based on clinical need will take place on Wednesday 18th April 2018, at the gates of Leinster House (Kildare Street) at 11:30am. The petition, signed by more than 18,000 people, calls on the HSE to remove the age barrier criteria it has set and give access to this life changing technology to those who clinically need it most.

From 3 April 2018, the HSE has made the Freestyle Libre available only to children and young adults with Type 1 diabetes aged between 4 and 21 years. ​

Gráinne Flynn, one of the campaign leaders stated “The Freestyle Libre provides more information than a finger prick meter about glucose levels to base our insulin dosing decisions on. This is more than just a game changer in diabetes, it empowers us to manage our diabetes better, reducing the number of dangerous low and high glucose levels. What frustrates me so much is that the HSE seems to have based its decision not on clinical evidence of improved quality of life but on cost saving reasons, indicating that, anyone with type 1 diabetes over age 21 is not worth investing €62.60 per year.”

All other countries who have reimbursed the Freestyle Libre system have made this life changing technology available to people with diabetes based on clinical need. Ireland is the only country who has placed an overarching restriction of age for 4 – 21 years and within this age group there are further restrictions for this cohort to access this technology

Donal Gilroy, a self-employed Energy Assessor from Sligo has been living with type 1 diabetes for 35 years, said: “I didn’t realise that I was having dangerous low blood glucose levels every night at about 3am until I started using the Libre. I rarely woke during these and my long-term health was affected. Once we discovered them myself and my consultant had a fuller picture of how my diabetes was being managed and we were able to address and eliminate the problems. I feel my health has improved significantly since using the Libre. Things, like not having to finger prick 8 times a day, not constantly having sore fingers has improved the quality of my day to day life.”

“All we are seeking, is the opportunity for our Consultant Endocrinologists to be able to make a decision based on clinical need to prescribe the Libre to patients they feel need it most, regardless of age. It’s not a lot to ask” added Grainne.

 

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My clean up begins by reducing the carbs

This time last year I was well on track with​ the​ ​control of ​my carb intake but then the home move started and as I was in temporary accommodation for 5 months I pretty much eat what ever was available with zero plan​n​ing.

October brought the final move to my new home but by then life had become all kinds of crazy so I kept eating pretty much what was available, handy and fast.

Christmas happened and nothing changed, then Easter …..
With all that chocolate.

​I know that some people dont know the importance of a daily carb intake but when you live with Type 1 Diabetes every gram of carbs you eat means a unit of insulin must be administered either through an injection or an insulin pump. ​After working out the carbs in that sandwitch or what ever im about to eat, i them must take into account what type of carb it is and how much fat is in it.

An example of this is a piece of friut Vs chocolate or something with a high fat content in it. Even if both have the same amount of carbs, they impact the blood at different rates.

The fruit carbs will quickly enter the blood and cause a very quick rise in blood glucose so il take the necessary amount of insulin just befor i eat it.

The chocolate will impact the blood at slower rate so depending on the type of fat content in foods i sometimes split the insulin dose i need for it, so if i needed 8 units for the chocolate i would take 4 units just before i eat it and then 4 more units an hour afterwards to prevent a blood glucose spike.

If i didnt do this and took the whole amount of insulin needed then long after the 4 hour period that the insulin remains in my system, the chocolate would still be rising my blood glucose.
The fat content in food slows the release of carbs into the blood so its important to administer my insulin so that it lasts as long in my system as is needed for the type of food iv eaten.

Living Life with ty[e 1 diabetes can ba a complicated business, and it certainly is work 24/7/365 but what i will say is it becomes your way of life, and although it remains a serious pain in the ass, doing everything we must do all day every day does become automatic.

YES I HEAR YOU ! we can eat what we want just like others, and …… yes we can, your right, BUT !

​Even though ​I manage​d​ my blood ​glucose​ every step of the way. I ​continously ​chased the high spikes with insulin and the lows with full sugar.

The result​ of all this was ​waking constantly through the night to a CGM alarm either showing that my blood sugar was way too high or way too low.

The weight gain​ that happened was inevitable both because of my food choices and my increased insulin needs. Insulin is a growth hormone, so it was gain by food and gain by insulin, and I do firmly believe this.

Easter Monday was day 1 of getting back on track. I unboxed the remaining Easter eggs and stashed them in my spare fridge in the laundry room. Out of sight is out of mind. That fridge gets used on​ly gets used on​ very rare occasions, like Christmas​ or when the weather people predict large amounts of snow, bringing on a panic buy.​

I​ have now ​done the “clean” and “lower carb” shop and ​i am ​well on track.

Day 1…..

By bedtime I remembered why this was a better way to manage my type 1, my CGM held a fairly steady even line all day and as it turned out, through the night too.
I slept all night straight through​ and​ undisturbed by a CGM alarm and was more than a little surprised that when I finally opened my eyes it was 9.30am​ that morning.​

I’m a chocolate addict so please don’t suggest “a square or 2 does no harm” I’m like an alcoholic when it comes to chocolate.

I’m only ever 1 square away from a feast. It’s either all or nothing.
So for now it’s​ got to be​ nothing.

Iv done this before and lost 3 stone relatively easily, dropped my HBA1C and felt amazing.
I guess I’m saying I’m very well experienced for this particular job.

 

My foods ?….
Well, rice​ will​ now become​ ​cauliflower rice
Pasta will be non existent
Chips – a thing if the past
Potato ? Well I learnt that mashed turnip is a good substitute.

Snacks –
chocolate rice cakes, “yes you read that right” the thinnest smear of chocolate Iv ever eaten but it satisfies a craving.

Fresh coconut, chopped and in the fridge ready for munching on.

Fruit and ​yoghurtI will also have daily, it feels sweet and bold but it’s easily managed if eaten whole.

The Paleo App is downloaded to my phone with lots of delicious recipe ideas that I can tweek to suit me.

Creamy sauces ? Made with coconut milk.

Breads ? Only if necessary but as I don’t eat it daily I don’t miss it.

Lots of eggs, fish, chicken, beef, and Ham.

Lots of vegetables and salads some of which I know have higher carbs than others so I’ll chose wisely

BUT ! It’s not chocolate, cakes, and the stuff that makes my blood sugar bounce off the walls while being chased by insulin, all of which leaves me feeling rotten and exhausted.

It’s not hard to stick to after the first few days.
Treat day is Friday, so that’s takeaway night if Iv been good the other 6 days.

I don’t suppose a walk daily would do me any harm !

I’ll actually be eating more and using less insulin. Instead of my CGM demanding attention, I hope to find myself wondering if it’s died because it’s so quiet.

And so it begins ……

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

 

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland

 

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

If you would like to make a donation to Thriveabetes – we appreciate every single donation.Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

https://www.diabetes.ie/fundraising/donate/

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SPARE THE TIME, TO EMAIL ALL YOUR LOCAL TD’S – #LIBRE4ALL

SPARE THE TIME, TO EMAIL ALL YOUR LOCAL TD’S – #LIBRE4ALL

Yesterday evening 5th April 2018, and on behalf of the diabetes community, we send an email to all TD’s in Dail Eireann inviting them to accept the petition signed by over 17,700 people, alongside Deputies Frank O’Rourke TD and Mary Butler TD on Wednesday 18th April 2018.

We would really appreciate it, if any of you can spare the time, to email all your local TD’s too. They want to hear how many of their constituents are affected by this. We have prepared a draft to get you started, just

“Copy & Paste”

but feel free to edit or create your own.

 “Who’s My TD” here is where you can find the TDs for your area.

************************************************************************************************************

 

(Insert your address here)

Re: Acceptance of Petition by TDs to make Freestyle Libre Blood Glucose Monitor available, based on Clinical Need, for all people with Type 1 Diabetes

Dear Deputy<INSERT TD’S NAME HERE>
(Emails for TD’s in your constituency can be found at
http://www.oireachtas.ie/members-hist/default.asp…)

My name is <INSERT>. I am an adult with type 1 diabetes/a parent of a child with type 1 diabetes and OPTIONAL TO INSERT YOUR PERSONAL SITUATION HERE.

As a constituent living with diabetes, I am asking you to represent me, and all your constituents living with diabetes, to accept a petition alongside Deputies Frank O’Rourke TD and Mary Butler TD on Wednesday 18th April 2018, at the gates of Leinster House at 11:30am.

The petition, signed by over 17,500 people is calling for the HSE to make the Freestyle Libre glucose monitor available to all people with diabetes based on clinical need at the discretion of their diabetes consultant and to remove the age barrier, recently set by the HSE.

I would also appreciate your help in bringing this issue to the attention of the Minister for Health, Simon Harris by placing a parliamentary question asking him to clarify his reasons for excluding people over 21 years of age with Type 1 diabetes from accessing this new life changing technology.

I look forward to hearing from you soon.

Yours sincerely,

Finally !!!! We got a reply from Minister Simon Harris’s Office,

 

Simon Harris, Minister For Health

 

15 MAR 2018 — Finally !!!! We got a reply from Minister Simon Harris’s Office, (See Below) and it would appear he would prefer that we do not clutter up the gates of the Dail.

While we understand his position and will certainly respect his request to deliver our petition to Hawkins House which would take us away from the Dail, to the dept of health where the press wouldn’t be, and no member of the Government or anyone else would see.

So I’m thinking …..
meeting outside the Dail and walking to Hawkins House together ?
Thats just my thoughts….

 

13th March 2018
Ref: MSHD0148-18

 

Dear Ms Lyon,

 

Minister Harris would like to thank you for your recent correspondence inviting him to meet with you

to accept the hand-over of your petition. Owing to a full schedule of Diary and Government business 

the Minister is unable to accede to your request. The Minister has asked that you deliver the petition

to the Department of Health, Hawkins House, where senior officials from the Minister’s Office will

collect it and bring it to the Minister’s attention.

 

Yours sincerely

Paula Smeaton
Private Secretary*************************

 

I’m Davina Lyon
Co-Founder of Diabetes T One & A Diabetes Life

https://adiabeteslife.com/

Seek-Question-Improve

 

 

 

davina-lyon

I’m Davina, I’m not a professional, just a person with type 1 diabetes sharing experience

 

 

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body (the pancreas in this case) as foreign and attack to destroy it. When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

 

 

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Press Release – HSE Denies Thousands Access to Life Changing Diabetes Device

 

Left to Right – Elizabeth (Liz) Murphy, Davina Lyon, Grainne Flynn & Rebecca Brannon June 2016 @ Leinster House

 

Press Release from Representatives of the Irish Diabetes Community

FOR IMMEDIATE RELEASE

HSE Denies Thousands Access to Life Changing Diabetes Device

Petition for “Equality for all people Diabetes” gathers over 16,000 signatures

 

The announcement last January by the Department of Health welcoming the HSE’s decision to reimburse Freestyle Libre with such restrictions leaves thousands of people with type 1 diabetes denied access to this life changing diabetes device. ​

Over 17,000 people with type 1 diabetes have been excluded from scheme.There are approximately 20,000​people with type 1 diabetes in Ireland​. ​According to the 2012Irish Paediatric Diabetes Audit, there are 2,750children under 16 years with Type 1 diabetes. With the current restrictions on the reimbursement scheme only a small percentage of that number will be included and none of the 17,000 adults with type 1.

The type 1 diabetes community has reacted angrily to this decision with over 16,000 people have signed an online petition campaigning for “Equality for all people Diabetes” created by Davina Lyon.

The HSE’s decision goes against the Equal Status Acts 2000 – 2004 – which states it is “unlawful for in Ireland to discriminate when providing goods, services or facilities on the basis” of a person’s age. Unlike the NHS whose guidelines on access to the Libre state they are “committed to promoting equality, eliminating unlawful discrimination and fostering good relations between people with particular protected characteristics and others.”

The HSE made this decision despite lack of clinical evidence to support their recommendation. The Health Technology Assessment Group HTAG Advice Note states that “it is unclear whether data from clinical trials(on the benefits of the Libre use in adults with diabetes) are generalizable to children”.

They have chosen to ignore the Experts Opinions who“consider the product would be of benefit to all patients with diabetes using multiple daily injections.

The HTAG Advice note estimates that the “average additional cost per patient per year for using

Freestyle Libre is €62.60”, making the cost of providing the Libre to all people with type 1 diabetes beapprox. €1.2 million, with an estimated additional savingin the“expected reduction in the need to perform finger prick testing of over 2000 times per year”.

The diabetes community considers this a huge insult as the HSE has already saved €5 million on blood glucose stripssince April 1st 2016, when the rules governing access to blood glucose strips for people with Type 2 diabetes were changed.

Representatives from the Diabetes community:Davina Lyon from Kildare/Offaly, Elizabeth Murphy from Waterford and Gráinne Flynn from Clare, have requested a meeting with Minister Simon Harris to discuss their concerns and to present the online petition.They have yet to hear when that will happen.

They have also been informed that members of the diabetes community, who felt discriminated against, have notified the HSE of a possible legal claim based on the Irish Human Rights Equality Committee.

 

What is the Freestyle Libre monitoring device?

The Freestyle Libre is a blood glucose sensor worn on the skin with readings taken by scanning a handheld device over the sensor. It reduces the need for finger prick checks.

The game changing element of this device is in that the Freestyle Libre provides continuous glucose information throughout the day giving a person more information to base insulin dosing decisions. Unlike Blood Glucose Monitoring via finger prick which provides very few data readings per day to make informed dosing decisions.

The Freestyle Libre is also more convenient, less invasive and comes at a reasonable cost to the health service.

 

— Ends —

 

Editor’s Notes;

For further information about the Freestyle Libre Campaign;

  • Gráinne Flynn. Contact:Mobile 087 6548320, Email Grainne@thriveabetes.ie. Grainne is an Adult with type 1 diabetes​​, Founder of the Type 1 Diabetes Community Group: Thriveabetes​.ie​. Creator and Blogger at BloodSugarTrampoline.com
  • Davina Lyon. Contact: Mobile 085 875 9822, Emaildavinalyon@gmail.com. Davina is an Adult with type 1 diabetes​​, creator of the online petition, Founder of Diabetes T One

 

  • Elizabeth Murphy. Contact: Emailelizabethmurphy13@hotmail.com. Elizabeth is an Adult with type 1 diabetes​​, Founder of Waterford Diabetes Support.

 

REFERENCES AND EDITORS NOTES

Press Release from Dept of Health on 19/01/2018

–http://health.gov.ie/blog/press-release/good-news-for-children-and-teenagers-with-diabetes-approval-given-to-reimburse-blood-glucose-management-system-freestyle-libre-harris/

 

Equality for All People with Diabetes Petition

– https://www.change.org/p/hse-health-service-executive-equality-for-all-people-with-type-1-diabetes
Number of ​people with type 1 diabetes is approximately 20,000​. ​
Number of people under 16 years of age living with Type 1 diabetes is 2,750 (based on the Irish Paediatric Diabetes Audit 2012).
– Source https://www.diabetes.ie/about-us/diabetes-in-ireland/
NHS NICE Statement on Equality

–Source https://www.nice.org.uk/advice/mib110/chapter/Equality-considerations.

 

The HSE Health Technology Assessment Group HTAG Advise Note

https://www.hse.ie/eng/about/who/healthwellbeing/htag/publications/htag-advice-note-freestyle-libre.pdf

 

June 2016 @ Leinster House with Diabetes Ireland advocating on behalf of our Type 1 community for better sevices’s

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Some Statements were a Bitter Pill to Swallow while we Strive to Thrive with Type 1 Diabetes

 

The speakers at Thriveabetes shared their experience and insight into their profession and / or their lives with Type 1 Diabetes. Sometimes funny and sometimes sad. Each touched a place in us that showed us that
they knew and understood exactly what we were all living with 24/7/365.
Sure of course they did……
 
It was a type 1 diabetes conference for us, and about us, to empower and enlighten us about treatments and technologies that would help with our daily management.
 
We also heard about the phychological impact of living with type 1 and how we could Recognize diabetes burnout and deal with it. All of which is very valuable information by a fantastic line up of speakers.
  
However I had the uncomfortable misfortune of sitting through a talk by a HSE professional who stated the following.
 
Statement:
We have a really good health service !

Fact:

Even Leo Veradker apologized last  week for our health care system after the prime time TV investigation into what goes on, saying he felt embarrassed for his colleagues. The media publishes fact daily the shortcomings in our health care system.
  

  

Statement:

By restricting blood glucose strips for people with Type 2 Diabetes who are treated in the following way:
  • By healthy diet and exercise – 0 strips Or 1 pk for 6 months.
  • On oral medication – 1 box per month.
  • Oral meds with risk of hypo – 2 box per month.
  • Type 2 using insulin – no limit.
The HSE spent €46.8 million has been spent in blood glucose test strips in 2014 and have saved between 5 – 7 million euro by putting the following restrictions in place.
  
Where did this saving go ?

  

Statement : 

It wasn’t actually seen, it disappeared into a sort of black hole.

  

Fact: 

This was a conference for people type 1 diabetes.
The complications in people with type 2 diabetes that will follow from these restrictions in the future will likely cost a lot more than the saving they are making. Then they are going to have to gain access to their sort of  black hole and pay for it.

  

Statement:

Neither myself or my family have diabetes, he stated as he showed a slide of his family.
Iv no idea what point he was making here. But I continue to wonder since ?

  

Fact:

The future may change that, you just never know, but for now this just means you have no idea what it’s like to live this life that we live.

 

Statement:

He stated that After practicing his talk on his students, he was asked by them was he “actually” going to stand up and say these things?
  

Fact:

That was when alarm bells should have gone off in his head so he could rein it in. But no, his ego wouldn’t allow that and he just had to tell us all about the savings he had made.
 
The headache brought on by these statements, and by me not verbalizing my feelings when hearing these statements had become so bad that I felt sure the pulse on the side of my right temple must have been visible to those around me. The pain and throbbing from stress, was so bad that the vision in my right eye was no more than a cloudy blur.
 
I did what I could to stay non verbal for as long as possible but when the slide appeared with the Libre on it my patience ran out.
It was as if it was some sort of reward for children and teens to have it reimbursed, and I think it was to show that this is why the Libre could be reimbursed by the HSE at all.
  
The point, that it was all from the sacrifice that our Type 2 colleagues were having to make, was a very uncomfortable feeling.
I did state at that point that the fact of it being made available under reimbursement for children and teens was discrimination against Adults who also needed it and I asked how can they justify their decision when the cost of the Libre Vs regular finger pricking showed a very small saving to the HSE.
  
I also asked would teens who were to be given it, have it taken away again the following year because they reached the age limit?
  
“He looked uncomfortable” and he had made me feel the same way.
  
I had a lot more to say about our health service but others needed time to speak too so I never got the chance.
Liz Murphy also managed to get a small window to make some important points. Well done liz, it wasn’t an easy situation.
  
A) There continues to be “NO” foot screening  programme in Kildare for people with diabetes.
B) Adults don’t have easy access to pump therapy as a normal option.
C) There is still no standard model of care for adults with Type 1 Diabetes.
D) Despite us being at higher risk of cardiac complications, there is no standard screening for this either.
  
By the time I get to my own clinic appointment in August, it will have been 14 months since my last clinic visit, but yet we have a great health care system ….. in his opinion……
  
I consider what this man was saying to myself and my fellow Type 1 colleagues to be an insult to our intelligence.
I strive to thrive with my type 1 diabetes using whatever tools I can get my hands on and by connecting with others, all with a purpose to empower me to keep striving to thrive with my T1D.
  
I advocate to try and play a part in bringing about change for the better for all of us.
I feel very strongly that if someone is going to go out on a limb with insensitive and thoughtless statements like these to a room full of people who live every day and night with type 1 diabetes, then they should also be prepared to stay out on that same limb and feel the anger and frustration people living with diabetes are feeling in this current climate.
 
The person making these statements was professor Sean Dineen who took over as lead for the HSE’s Diabetes Clinical Programme 2016.
His interests include developing and evaluating programmes of self management education for people with diabetes and developing optimal models of community based diabetes care.
He didn’t empower me to strive to thrive with type 1 diabetes.
However he did empower me to want to fight him, his nonsense and his attitude towards our health.
His “proud statements” were certainly a very bitter pill to swallow, especially as we hold a petition of over 16,000 signatures to prove to him and his colleagues that we are NOT in agreement with him or the HSE’s statement re: the Libre reimbursement debacle.
  
If anyone holds any information on “the black hole” please feel free to share it with us.
 

Footnote:

NO ! this was not the time or place for this talk by him……
The problem however, with us staying silent for this kind of thing, is that silence can be seen as approval or agreement, and we cannot have that. What was said by those who did actually get to speak, needed to be said…….
  
  
Me ! Reflecting on my yesterday ……….

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

 

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.

I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body (the pancreas in this case) as foreign and attack to destroy it. When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

,

From Diagnosis to the Here and Now with Type 1 Diabetes

 

 

 

I was diagnosed with type 1 diabetes relatively later in life​, I was the wrong end of 40 and looking 50 straight in the eye and i was living life to the fullest.

my only big problems back then was when i held my hand out to pay for something in a shop, I had a tremor or shake that I had no control of, and i felt like someone who had an alcohol problem, but hadnt made it to the bar that day, yet !!!!!

my vision had become quite blurred, and my eyes were sensitive and watered easily and with the slightest draft, the wind make me look like i was crying continuously. It was then that i gave up wearing mascara because i always looked like someone out of the Adams family.

I dreaded getting a cut or scratch anywhere on my body because even a graze with no bleeding led to sore, wet, deep wounds that literally took months to heal. gardening and pruning roses was a nighmare.

I always had a kidney infection, there was never that burning stinging sensation people usually talk about, and I certainly never went more often than I usually had, but the pain in my back was that bad I would’nt be able to straighten from a bent position. I could wake up in the morning just fine but an hour or two later id be doubled over.

my energy level was good, and as a matter of fact id be up and dressed for work by 7am and more than willing to continue with whatever I needed to do until the early hours of the morning, every single day.

Now for the good part.
I had no issues maintaining a slim figure with absolutely no effort what so ever. No matter what I eat I remained slim,

The classic 4 Ts of Diabetes symptoms are:

– Thirsty – excessive thirst
– Tired – lack of energy / tredness
– Toilet – frequent urination
– Thinner – weight loss

If you are experiencing any of these symptoms it would be a good idea to visit your GP for testing.

As you can see I didnt exactly follow the typical symptoms, but in fairness Diabetes wasnt on my radar. What eventually got me to a GP to voice my concerns was the shake / tremor in my hands and the kidney infections. that I was constantly on antibiotics for.

I had been in remission from full blown Graves Disease for 5 years and I knew the signs and symptoms of Graves very very well.

Graves Disease is and Autoimmune Disease that effects the Thyroid Gland, in my case it gave me an overactive thyroid, and because the Thyroid Gland controls all the other organs in the body there’s not a part of the body it does’nt effect.

Over Active thyroid ? ( in simple terms ) meant every part of me was in overdrive all of the time.

I was reluctant to go to my GP and say I suspected my Graves was back because I knew medication would make me gain weight as my blood tests went back within normal range.
Yes ! I hear you say. VANITY !
Thats right it was pure vanity, I looked good with little effort and I was happy about that.

I will never forget the GP saying NO ! I had only had my thyroid bloods done a couple of months before this and they were fine, but, he said, “lets do a glucose test” first thing in the morning. fasting, then drink a bottle of lucazade and exactly 2 hours later we do another glucose test.

 

The rest as they say is history:
Shocked, horrified, very upset, confused, frightened, shame and mortified are all words I could use to describe my initial feelings at diagnosis. In fact I cried that much in the weeks that followed that tissues or kitchen roll just didnt have the absorbtion I needed for the tears I cried. I cried into towels, wouldnt leave the house and didnt want to tell people.

 

I too, had heard the  opinions of people of how they thought  diabetes happened to a person, and I sure as hell knew I didn’t cause this but didn’t have the strength to argue or educate the ignorant. I just wanted to crawl into a corner and hide from it all.

The months that followed were very tough and very isolating, people said “it could be worse”, “aw your not pricking your finger in front of me, thats gross”, “please dont inject here, people will get the wrong idea, just leave it and sort yourself out when you get home”.
Then when id get home and just cry some more. I had stopped going out to lunch with friends, I was becoming an isolated recluse..
My dominating thought was that as food was causing a problem I was ok to just skip that part of the day until i was desperate.

I clearly remember having my lunch on a plate on the kitchen table one day, beside it was my insulin pen all ready for what had to be done. I looked at that image for hours and then threw my lunch in the bin and put away the insulin pen.

I hadnt had my Dafne course or much educational information at that point so I did’nt understand that insulin would be needed even without food but the one thing that was loud and clear was that there was no way out of this and i felt doomed. It was like living a nightmare.

Yes I was that low emotionally and my confidence was totally gone. I was now unsure of everything, I was lost and I just could’nt imagine a way forward. Those were very dark days for me and my daughters who worried endlessly about me.

The only way was up !

Slowley I began to try and seek out groups where I could meet and chat to others just like me but without much success until one day the hospital phoned and said they had a 3 day course starting and requested I attend it, which I gladly did just so I could meet other type 1’s. The actual education was of secondary importance to me at that point.

I  got to sit around a table with others and tested blood publicly, this was part of the course I was doing on carb counting and learning about food types and groups, how to weigh food and calculate insulin doses, how to calculate corrections, basically all the stuff I was going to need in order to live, and have a healthy and safe life with type 1 diabetes.

It was the first time since my diagnosis that I felt included in anything, a part of something, just one of the gang, and I began to feel normal again.

This was my turning point, this is where I gathered my thoughts, started to research and learn as much as I could, this is where I started to question everything.
Not that i wanted to be difficult, but i wanted to gather as much information as I possibly could about the kind of life I now had to live.

I found online support groups, met lots of people who had lots more information, and the learning continued.

Being comfortable again !

I knew that the “Me” I knew so well was back when I ventured out and tested and injected when ever, and where ever, was necessary.
I knew that “Me” was back when I started to react to things that people would say to me that was incorrect while they felt free to comment on my diabetes.

I knew that I was back when i stopped suffering fools, and I stopped being silent about what was important to me. I was well able to put the Diabetes police well and truly back in their box, ( we all know some of these ) and when I heard people quote chapter and verse about ” curing, reversing, and getting rid of diabetes with exercise and diet i was well able to step up and correct them, all in the name of diabetes awareness.

I knew that i was back when i began to speak out about things like the lack of services for us and the difficulty I encountered when trying to access technology that would make my diabetes management a bit easier.

The more research I did the more I realised the shortcomings of our health care system. I remember needing so much more than my hospital visits were giving me but i do consider myself one of the luckier people in the system.

I attend Naas general hospital in Co Kildare, so im one of Dr Kevin Moore’s patients, Kevin is well known for his up to the minute information on latest technology, he is extrememely easy to talk to and approach, and he is in no way judgmental.

Dr Kevin Moore also attends Thriveabetes, the 1 day conference for people with type 1 diabetes. He comes as one of the conference speakers and educators. At the last Thriveabetes one of the topics we requested he talk to us about was weight management in relation to type 1.
As insulin can increase weight it’s important to chose foods wisely as the higher the carb content the bigger the dose of insulin required. He also spoke about the medications available to us for reducing weight, how exercise effects our blood glucose levels, and many other topics we as patients put questions to him on. I found this talk hugely beneficial.

the next conference is only weeks away, 24th February 2018 and im so looking forward to it.
if you want to register there are a few places left but not many so so dont delay securing your place. Here is the link you will need to register.

http://thriveabetes.ie/index.php/2018-thriveabetes-register-here/

With every day that goes by it’s easy to establish where the services are lacking for people with type 1 diabetes.

Diabetes Advocacy was born in me when I realized There’s no regular and routine foot care even though we are at greater risk of amputations.

There is no regular and routine cardiac examinations or scans even though we are at a greater risk of heart problems because of having Type 1.

Emotional and psychological support was never mentioned when I was struggling so badly after diagnosis.

An adult requesting an insulin pump goes on a wait list if they are lucky but many hospitals don’t have a pump start clinic so transferring to another hospital to avail of a pump clinic often means traveling great distances taking many hours. A pump start is not a 1 day appointment. its done over several full days as you prepare to actually pump insulin for the first time.

If we request a CGM ( continuous glucose meter ) then we must be prepared to fight a hard and persistent fight with an outcome that’s not a forgone conclusion.

This is not by any means a failing on the part of my diabetes team, this is a failing on the part of the HSE who don’t provide such services.

Still we must manage our type 1 every day and night for the rest of our lives. We seek out the technology available to make sure we have the best chance at a healthy life, and in turn this would cost the HSE less on diabetes complications in the future.

Now here’s the bit I don’t understand. If every person with type 1 who wanted to use a Freestyle Libre flash glucose meter were able to access it there would be a saving to the HSE of Aprx 1% on every patient using it, and a further saving on future diabetes complications.

Then they announced the Libre will only be available to a few hundred
children / teens, but not adults.

And that’s why Diabetes Advocacy is necessary.

 

 

 

From Diagnosis to the Here And Now?
Iv gone from some of the darkest days in my life after diagnosis.

I Somehow managed to rise like a phoenix from the ashes and I found the strength within me to start learning. To connect with those who felt just like i did about important matters and to start advocating.

 

 

 

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.
I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

 

davina-lyon

 

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body (the pancreas in this case) as foreign and attack to destroy it. When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

,

What Diabetes Ireland do for us

diabetes-ireland

Diabetes Ireland are in total support of what we are doing re: our petition and presenting it to Minister Harris, we are consulting with them about any plans we make and they will be with us when we present our petition to Minister Harris.

However something struck me during this whole process.

Back in the day ( as they say ) did you know that people with diabetes had to pay for their supplies & medications. It was Diabetes Ireland and the work they did that finally got our medications & supplies included in the LTI – long term illness scheme saving us hundreds of €€ per month.

Diabetes Ireland also got the eye screening programme set up, the pumps for kids, & structured education for kids, both huge successes.
But people don’t realize all of this. Up til now they have been working on getting the adults on the agenda but they cant do that with out us.

there are many more examples of how we have benefited because of their work, but this is just a couple of examples.

Although us volunteers And Diabetes advocates work voluntarily, Diabetes Ireland have large overheads and need funding.

When something goes wrong or something happens that we don’t like, we are quick to go to their Facebook page and complain bitterly and criticize while expecting them to act on whatever we want them to.

I wonder how many of those complaining and criticizing are paid up members ?
It’s only €30 a year. (That’s 0.09 cent a day or 0.57 cent per week)

I’m asking that you support us by taking a membership with Diabetes Ireland, They are the first people we go to when things are wrong but they can often be the last people we support when they need it.

Thank you in advance for your consideration

Davina

 

 

diabetes-ireland-membership-ad

, , ,

Everything I was, I carry with me. Everything I will be, lies waiting on the road ahead. – update -Equality for all people with #Type1Diabetes

 

 

 

Everything I was, I carry with me.
Everything I will be, lies waiting on the road ahead.

There was a time when Type 1 Diabetes was not a part of my life, and then came the diagnosis.
Now future diabetes advocacy lies waiting on the road ahead for me and everyone else who wants to make a difference.

Since we set up the petition –
Equality for all people with #Type1Diabetes.
Reimburse Freestyle Libre for adults and children equally.

It all started with an announcement by Minister Harris which left me with a feeling of discrimination being imposed on us adults with type 1 diabetes.

The anger set in when the reality and gravity of this decision finally began to become obvious. The reality that only a few hundred children would actually benefit for Libre reimbursement by the HSE and NOT the thousands that the media headlines actually reported.

A petition was set up to give people an opportunity to voice their feelings and do something about it.

Since then !…….
The petition has nearly 13,000 signatures and many comments & reasons for signing. Please sign it if you have not already done so.

https://www.change.org/p/hse-health-service-executive-equality-for-all-people-with-type-1-diabetes?recruiter=63600589&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=facebook_link

 

So what next I thought, as the signatures reached 5,000 and then 10,000.

I must admit it all felt exciting so as usual when something big is happening in our community I got in touch with Grainne Flynn, a fellow type 1 who’s advice, insight and and ideas are always up there where I wouldn’t normally think to reach.

I always feel like I’m riding the crest of a wave when advocating alongside Grainne. I have strong suspicions that Phil who is Grainne’s husband plays a huge roll in the advocacy work we all do as it begins to reach its peek and he does it so quietly, that we, outside of their family circle don’t know it, or even think to give him the recognition he probably deserves. So …. Thanks Phil !

 

Then Liz Murphy, a fellow type 1 who’s knowledge, of the “how to” go about something is a real insight. At those times when a plan is formulating keeping a pen and paper handy is a must when talking to Liz.
Information just rolls off Liz’s tongue and it’s not always stuff I understand. Research is always needed after our conversations. Liz is a very knowledgeable lady, especially about all things political and their workings.
Working with Liz ? Lol can sometimes feel like doing a degree after a crash course in a subject, but advocating with these two individuals is always a buzz and exhilarating. They are achievers who inspire me to achieve also.

 

#1 in 15 people in Ireland have Diabetes. 10% of those have Type 1 Diabetes

 

Once a plan of action is considered the next call is to Anna Clarke ( pictured centre ) from Diabetes Ireland.

Now this is an important move. They are often already in negotiation in relation to something we feel strongly about and it’s important not to cause any difficulty in those negotiations.  To me personally, getting their support for whatever advocating I’m doing at the time is important. As a community with diabetes their support is vital to us and any of our advocacy projects. I feel that without Diabetes Ireland in our corner we are just fighting.
With Diabetes Ireland in our corner we are on a journey, a mission to succeed no matter how long it takes.

I didn’t always understand how this works but I do now. We as a community are taken more seriously with their support. Diabetes Ireland are in turn stronger when working on our behalf if we are behind them.
Their advice will always set us on a path in the right direction.

I once jokingly said to Anna, “I don’t know how I get myself into these things”. It was right before our delegation went in to Leinster house to address ministers and boy was i nervous.  Anna and Kieran were with us that day and in the weeks before it as we prepared. Her answer to me was that I was passionate, and it was my passion that got me there. She wasn’t wrong, and I felt enormously flattered that she saw me in that way.

I always feel respected and that I’m taken seriously by Anna and the Diabetes Ireland Team, but I’d understand if in the past they thought I was a pain in the ass lol.

 

Frank O Rourke TD in north Kildare is my “go to” man. Frank has worked and continues to work tirelessly on our behalf.

 

 

 

Liz has a “go to” TD also, that’s Mary Butler TD in Waterford where Liz lives, and between Frank and Mary they are sure to bring our issues forward to Minister Harris. It was these two TDs that got our delegation in to Leinster house in 2016 to address TDs about our diabetes services.

 

It’s primarily these two individuals who are continuously working on our behalf with parliamentary questions and topical issues in the Dail.

Grainne, Liz and myself have recently done radio interviews and have had journalists publish our views as diabetes advocates in papers in our local areas.

There have been blogs written, and our thoughts and feelings published on social media.
we continue to keep the need for reimbursement of the Freestyle Libre for people with type 1 diabetes in Ireland inclusive and without discrimination for all people with type 1 highlighted, and we will continue to work towards a successful outcome for all type 1s in our community and not just those of a certain age. We also continue to advocate for better diabetes services.

 

Out next goal now is to secure a date to meet with Minister Harris to present him with a copy of our petition and when we secure a date to do that we will let you know, you may want to join us ………

This is due to be brought up in the dail as topical questions to Minister Harris in the coming weeks and that will be televised. As soon as we get that, we will of course post it to our social media accounts.

Watch this space as each of us share what news we have with you all in our own unique and individual way.

Davina

You can find us here :

Grainne – Blood Sugar Trampoline
https://www.facebook.com/BloodSugarTrampoline/

Liz – Waterford Diabetes Support
https://www.facebook.com/waterforddiabetessupport/

Me – Davina – Diabetes T One
https://m.facebook.com/DiabetesT1Ireland/

 

 

davina-lyon

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.
I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.
If you would like to make a donation to Thriveabetes – we appreciate every single donation.

Diabetes Ireland have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :

, ,

Back In The Fold – #Thriveabetes 2018 – February 24th

Why do I love being an active advocate in our Type 1 community ?

Here’s why…..

Until there is a cure – making the most of diabetes treatments and technologies

 

Iv is been missing in action for most of 2017, moving house in a complicated way took up most of my year ( February 2017 until Christmas ) during that time I did feel quite cut off and isolated from all my T1 colleagues but it had to be done once I’d started.

I was beginning to feel a serious lack of motivation, with a sense of retiring from the world.

Then Minister Harris made that ludicrous decision to only Reimburse Freestyle Libre for children and teens and that’s when the anger set in.
The injustice of it, the discrimination of it, it was a bloody awful decision he made, a totally crazy, senseless, illogical decision.

Following the announcement there was a fast and furious flurry of communication to me from folk in our Type 1 Community.

What should we do ?
I know ! I set up a petition to let people actually do something and be proactive about how they felt, a bit like giving them a voice.
It’s only been 6 days since I opened it and we nearly have 10,000 signatures. Now that’s a lot of voices objecting to the decision that was made and announced by Minister Harris.

Now I’m all motivated and just in time for Thriveabetes 2018.
I love that all of us there on the day talk the same language and live the same kind of lifestyle, we are carb counters, insulin injectors or pumpers, sensor wearers, finger prickers and lickers, all of us on a long time mission to manage the ever changing numbers on a blood glucose meter in order to stay well and more importantly, to stay alive.
It’s a very empowering feeling being among so many folk who live a life just like I do. Great to meet them in person and great to chat with them face to face.
Are you going ? Have you booked your place ?
Do it now before it’s too late.

A selection of photos from Thriveabetes 2016

Thriveabetes Volunteers – Im Back In The Fold

Dr Kevin Moore, Diabetes Consultant / Endocrinologist
discussing weight management and Type 1 diabetes with us.

 

Joe Solowiejczyk – A Mile In My Shoes – Diabetes Nurse & Educator

 

 

 

 

Christine, Grainne & Rebecca

Grainne who is as always a huge support to me will assist with the next step for the petition to advocate for an all inclusive reimbursement of the Freestyle Libre for those who need it.
We will also be in touch with Anna Clarke & Keiran O Leary of Diabetes Ireland to request their support.

Dr Anna Clarke – Diabetes Ireland

 

Let me clearly state right here and now.
Yes ! I opened the petition, but I’ll be working with my peers on this to hopefully bring this issue to a successful conclusion.
Personally right now I don’t need it, but who knows what the future holds. This is not about children with type 1 diabetes and not about adults with type 1 diabetes.
It’s about everyone in our community who needs it #AllInclusive and #WithoutDiscrimination
https://www.change.org/p/hse-health-service-executive-equality-for-all-people-with-type-1-diabetes?recruiter=85172558&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=facebook_link

And all of a sudden I’m back in the fold.
See you all on 24th February in The Red Cow Hotel. Thriveabetes here I come……..

 

 

davina-lyon

Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.

*IMPORTANT INFORMATION*
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.
I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.

Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.

Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.

There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.

Please support me to help raise funds for
Thriveabetes or Diabetes Ireland.

Thriveabetes is completely organised by volunteers. The financial cost of Thriveabetes is subsidized through fundraising, event ticket sales, sponsorship and an adjoining exhibition.

If you would like to make a donation to Thriveabetes – we appreciate every single donation.

http://thriveabetes.ie/index.php/donate-2/

 

To Donate to Diabetes Ireland who  have been a huge support to me and our Type 1 Community.

Diabetes Ireland Fundraising link :