Skip to main content

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

2014-01-14 13:18:49 +0000

Poster for new awareness charity https://www.facebook.com/photo.php?fbid=251716394996486&set=a.222573574577435.1073741828.219120364922756&type=1&theater

2013-12-18 16:15:33 +0000

https://www.youtube.com/watch?v=wDq5dLr1CyY Christmas video

2013-12-05 11:05:16 +0000

Hey everyone thank you for all of your support, we are making progress in a lot of areas at the moment, regarding some possible funding, we are also looking at the human rights side of this with some Harley street lawyers and we now have some connections with pharmaceutical equipment makers in the US. I have recieved an email on all of the negatives of getting this developed from a charity that i thought would like to help and know this is not an easy ride. This product does not exist, it can exist. we live in the year 2013 !!!! for goodness sake it is such a small ask. If engineers and scientists of the world cannot put a simple pen injection together that is in itself rather worrying. so that is where we are and i'm quite confident that no one has made this because of the funding of such a product and this being such a rare condition. THANKS AGAIN FOR ALL OF YOUR SUPPORT !!! we are nearly at 8,000 signatures now.

2013-12-02 12:03:30 +0000

We have a christmas tree in the christmas tree festival in stroud from today until next monday, please pop in and see it if you are passing https://www.facebook.com/rachelpeglersavinglivesforsterioddependants/posts/236469883187804?notif_t=like

2013-11-29 16:29:53 +0000

Hi Guys this saturday a christmas tree for the campaign will be going in to the christmas tree festival at st laurences church Stroud it will be on public view from monday for a week ........ Sad to say molly is still not well at the moment, she has not been in school for weeks and will be in hospital next week..... please think of her and share this petition thank you

2013-11-21 11:22:13 +0000

JFK had this
http://www.ibtimes.co.uk/articles/523880/20131120/jfk-john-f-kennedy-autoimmune-disease-aps.htm

2013-11-21 11:21:29 +0000

another reason for this
http://www.dailymail.co.uk/news/article-2511008/Two-paramedics-struck-telling-dying-woman-stomach-bug.html?login#readerCommentsCommand-message-field

2013-11-19 10:00:36 +0000

A big thank you to Archway school in Stroud who are doing year assemblies for mollys campaign generating much awareness and signatures, This is a great way of the condition being understood and thought about.

2013-11-13 09:08:05 +0000

Please feel free to print out put up wherever may help
https://www.facebook.com/photo.php?fbid=10201286254733264&set=a.1231671706795.35487.1079195991&type=1&theater

2013-11-08 17:06:58 +0000

Official injection campaign
https://www.youtube.com/watch?v=2OyK3-G2TcE

2013-10-18 17:41:31 +0100

Hello everyone, every year I have a Christmas tree in.the Christmas tree festival in my local town, I normally put one in for my artwork business. I have given up being an artist for a while to work on this and take care of my little girl, this year I am putting one in for this campaign along with a paper petition, it is very popular and runs for 2 Weeks every Christmas attracting hundreds of visitors and much media attention.
My idea is to make baubles
with people who need this pens faces on to get across the message that we are talking about real people and not just numbers that cost too much money, if you would like to be on a bauble please send me a photo .... Sorry the fairy on top of the tree is reserved for my little lady :0) thank you so much xx

P,S PLEASE SHARE i have had no internet for a week so have not been able to promote it its gone from 100 signs a day to just 20 ...... PLEASE KEEP IT ALIVE ...... I thank you :0)

2013-10-12 22:02:46 +0100

Share this .. in her own words
https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn2/1380064_10201069208507244_1323957167_n.jpg

2013-10-11 09:50:43 +0100

Education and awareness is the key
http://hsc.unm.edu/emermed/PED/emsc/training/adrenal/adrenal1.html

2013-10-11 09:42:38 +0100

Please read this !! hideous !!
http://clearlyalive.blogspot.co.uk/2013/06/the-nightmare.html

2013-10-11 09:39:24 +0100

This is how it is all over the world http://cushingsmoxie.blogspot.co.uk/2011/12/my-friends-with-adrenal-insufficiency.html