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.
For cortisones sake ! give steroid dependents the life saving injection they need
To: National health department & pharmaceutical companies. non uk??? click link below text
of 4,000 signatures
To Develop a life saving pen injection for all steriod deficient children and adults
Why is this important?
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
I shall march right up to downing street if i have to :0)
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
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
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.
Please feel free to print out put up wherever may help
Official injection campaign
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)
Share this .. in her own words
Education and awareness is the key
Please read this !! hideous !!
This is how it is all over the world http://cushingsmoxie.blogspot.co.uk/2011/12/my-friends-with-adrenal-insufficiency.html
Thank you for your support it is much appreciated
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.
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
Thank you to the stroud news for covering this
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
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!!!!!
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.
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
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!
Thank you to pituitary Uk for your support and backing
News of petition hits front page head lines in Ireland
1,000 signatures reached
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.**
Nearly at 1000 signature!! thank you so much please share x
The more I think about this about this being an 'emergency' treatment the more bizarre it becomes :0/ https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-prn1/p480x480/1014305_10200943769331343_496172405_n.jpg
500 signatures reached
Thank you so much everyone who has signed so far you don't know how much we appreciate it, please share this with your friends
100 signatures reached
50 signatures reached
25 signatures reached
10 signatures reached
Joanne A.2013-12-07 00:14:21 +0000
amelia g.2013-12-06 23:39:51 +0000
Heidi O.2013-12-06 23:30:12 +0000
Flora S.2013-12-06 23:07:29 +0000
Paul C.2013-12-06 23:03:51 +0000
Victoria W.2013-12-06 23:02:10 +0000
lesley m.2013-12-06 22:47:21 +0000
Allan L.2013-12-06 21:59:18 +0000
Rebecca L.2013-12-06 21:57:07 +0000
Claire T.2013-12-06 21:56:29 +0000