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To: Matt Hancock

For cortisones sake ! give steroid dependents the life saving injection they need

We would like the British government to step up and help get a life saving injection pen for adrenal insufficient patients developed.
People with allergies have life saving EpiPens in times of anaphylactic shock. Adrenal patients have an old fashioned glass vial a syringe and a 2 inch needle. It is not acceptable in this day and age. They are both at risk from quick death in a crisis.

Why is this important?

People are dying. Adults teenagers and children. My daughter Molly was diagnosed in 2013. Our life saving injection consists of 3 pieces. A glass vial containing liquid medicine. A syringe. And a 2 inch needle. Patients are expected to draw up the medication in a syringe, attach a needle and then intramusculary inject it into the thigh. All whilst going into a coma because their organs are shutting down. This is not acceptable. My daughter cannot do this. Others have failed too, some resulting in death. Schools and workplaces will not give the old fashioned style injection leaving patients with their lives in the balance. Since I started this petition hundreds of adrenal patients have died. I now have a pharmaceutical company and a pen developer. We just need the British government to help us make this happen.

This below is the original text.

My little girl who is 14  has been diagnosed with hypopituitarism, thus meaning her pituitary gland is not  working affecting many glands in her body.
The most serious being her adrenal gland, she is now cortisone dependent which means she needs to carry a life saving emergency injection everywhere she goes. Because this condition is quite rare there is not a quick pen injection like the epi pen or diabetes pen. This means that in a time of crisis a small glass bottle containing cortisone is snapped opened a syringe is drawn up with the medication, a sterile needle is taken out of the packet and then attached to the said syringe. This is then injected intramuscular in to the leg.
I am very sure that my little girl in a close to unconscious state would not even be able to take the top off the little glass tube let alone draw it in to a syringe and then inject it in to herself but this is  what she would HAVE to do to save her own life if she were alone. I'm terrified to let her out of my sight. Even I worry that in this situation as a parent I would not be able to calmly do this. I know many other mothers and sufferers also feel this way, it seems that it is not viable  because there are very few people with this condition which gives the impression that their lives are not as important as those who suffer with diabetes or fatal allergy sufferers. 
Ultimately I would like my little girl to finally have a normal life, she has suffered with very poor health for the past 14 years, she has gone through so much and come through so much I think now she deserves the right to a more  healthy life with the safe knowledge that no mistakes can be made in saving her life in an emergency situation. 
She needs to fly the nest eventually like her brother and sisters will, she cannot go out in to the big wide world by herself without an easy to use pen, consider if this were yourself or a family member she deserves the right to an independent life.
This injection pen could mean life or death to all of these people.
Please consider listening to my plea,
I will do anything personally in my own power to make it happen, everyone deserves the right to life. All other petitions and campaigns have fallen on deaf ears. So please everyone get behind me and show your support.
Using a 3 three year olds words (her words) 11 years ago whilst suffering double pneumonia in hospital on Christmas Eve.
'Mummy its not fair any more like this' It hasn't been fair since then with her health and this situation is not fair either, her words may be in the right places now but she is still my little girl and i love her so much.
Please listen this time
Yours sincerely
Rachel Pegler.

IMPORTANT INFORMATION FOR NON UK RESIDENCE please sign this one they will all be counted together
http://www.change.org/petitions/pharmacutical-companies-health-chiefs-develop-a-life-saving-injection-pen
For more info on how you can help click here
https://www.facebook.com/rachelpeglersavinglivesforsterioddependants?notif_t=page_new_likes

http://www.change.org/petitions/pharmacutical-companies-health-chiefs-develop-a-life-saving-injection-pen#

A MESSAGE PLEASE READ
From Audrey another mum from Northern Ireland who's daughter Victoria suffers from Addisons, we are in this together now all of the way . please sign for her too and many others like her,

' I know some of you have already signed this petition and I'm extremely grateful. If you haven't already signed and shared it will only take 30 seconds of your life to add your name to this petition. Many of you know my daughter was diagnosed with Addison's Disease last year along with a few other illnesses. It is a life long and life threatening condition. She relies on family members to inject her if she goes into Adrenal Crisis, but this isn't a straight forward ready made injection..it consists of a syringe, 2 needles and 2 vials...would you be comfortable preparing that and injecting your loved one when they are dying in front of you. I've no doubt it will be extremely hard to keep my emotions at bay and think clearly. Victoria isn't well again, we're waiting on further test results to see what is happening with her body now. Although this petition isn't Victoria's story, this young girl needs the same treatment. Please sign and share this to try and get an epi-pen manufactured for people like Victoria and Molly. Many thanks

How it will be delivered

In person to downing street

Category

Links

Updates

2013-10-11 09:37:19 +0100

Thank you for your support it is much appreciated
http://cushingsmoxie.blogspot.co.uk/2013/10/sign-petition-we-deserve-better-than.html?m=1

2013-10-09 17:04:36 +0100

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2013-10-04 12:22:17 +0100

A message from a lady in Australia
This may not mean a lot to many of you, many of you may not even know what this means. But to people like me who have a health condition which means I am steroid dependent, one day this may mean the difference between me staying alive and, well not.

Currently I have to take a little kit with me whenever I go away so that if something goes wrong I can inject myself (or Luke can inject me) with life-saving cortisone (a steroid drug). Having an epi-pen type arrangement would mean I could be injected by someone who does not have to be trained in the correct technique or that I could inject myself quickly and easily even when in crisis.

To sign a petition for an epi-pen style device to be developed for steroid-dependent people, please like and PM this page with your name, post code and email address. Yes, this is a UK-based petition but your voice can still make a difference, not just to the great unknown but to me and to my family.

2013-10-04 11:11:44 +0100

Hey guys a lot of people have been trying to sign from abroad this is only uk based but if you wish to sign the paper copy please like this page and private message the page with your name email address location and postcode, thank you for your support
https://www.facebook.com/rachelpeglersavinglivesforsterioddependants?notif_t=page_new_likes

2013-10-01 14:57:14 +0100

Thank you to the stroud news for covering this
http://www.stroudnewsandjournal.co.uk/news/10708032.Brimscombe_mum_s_plea_for_injection_pen_which_could_save_her_little_girl___s_life/?ref=mr

2013-09-30 10:17:55 +0100

Andrea H thank you so much for your signature, i believe the problem may be due to the injection being intramuscular ? ...... i thought may be this was causing the problem on the developmental side of things but research is telling me it can be developed. I guess if they can put a man on the moon in the 60's someone can do this in 2013 :0) fingers crossed thanks again your support is very much appreciated R xxx

2013-09-29 19:00:57 +0100

This is what molly made me for my birthday this year, help us give her the life she deserves, People with this condition are not just numbers THEY ARE REAL!!!!!
https://www.facebook.com/photo.php?v=10200365438713439&comment_id=67655402&offset=0&total_comments=5¬if_t=video_comment

2013-09-27 19:06:26 +0100

Hopefully in the press next week Molls not great at the mo she has been off school for 2 weeks now, hopefully they will level all of the hormones and get the correct balance soon,
This is how we got to age 14 ................ This is why im so determined to make this right hopefully when all of her hormones are replaced she will feel better than she ever has in years............
The attached post is An extract of an email i wrote for an article, lets just remember there are thousands of others like her who just need a break and a chance not to constantly worry about the worst.
https://www.facebook.com/rachel.pegler.14/posts/10200985159966083

2013-09-26 13:59:15 +0100

Guys i am reading ALL of the reasons for signing ..... i cant see the screen through the tears , i am new to this condition and had no idea how under estimated it is, how little training health care people have in it, and how many people suffer. seriously im doing this for all of you, i have never felt more strongly about something in my life and will never give up...... Yours humbly R x

2013-09-25 16:06:51 +0100

I have found another article from 2011 I also know that the pituitary foundation took a petition to london a few years ago THEY HAVE TO LISTEN THIS TIME!!!! SHARE AND READ AND SIGN LIKE MAD!!!!!!!! I have no idea why they do not think this important!
http://www.wiltsglosstandard.co.uk/news/8887279.Sick_Megan_s_plea/

2013-09-25 15:56:15 +0100

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2013-09-25 15:50:40 +0100

Thank you to pituitary Uk for your support and backing

2013-09-25 15:48:24 +0100

News of petition hits front page head lines in Ireland
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2013-09-23 22:52:39 +0100

1,000 signatures reached

2013-09-23 12:09:25 +0100

Just one of the reasons to sign, this is so important guys, im getting more and more feed back from people who have cut themselves on this glass bottle, dropped the bottle, have a dependant like my child who could not manage this oudated injection, there are so many people out there who want this so they / their loved ones can have a normal life.
A quote from one signature .......... if gp's and nurses have problems how on earth would a child manage?
**i Suffered my second adrenal crisis at my GP surgery this week. Even with two practise nurses and the Gp in attendance drawing up the injection is an awful fuss in an emergency. Couldn't agree more that it is time we had the same equipment as diabetics and anaphylaxis sufferers for a life threatening condition where time is critical for a positive outcome.**