20,000 signatures reached
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
IMPORTANT INFORMATION FOR NON UK RESIDENCE please sign this one they will all be counted together
For more info on how you can help click here
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