Story
Hi, a lot of my friends know about this, but for those that don't, I am doing a charity walk. Let me explain, when I was younger, I received growth hormone injections, which I later found out were infected with a disease,which I have had to live with, but I'm still here and I'm taking it one day at a time.
I found out in 1996, when the BSE crisis arouse. This disease is CJD and due to the timing of BSE, most people assume CJD is mad cows disease. My mum gave me thousands of injections, three times a week, hoping to help me with my stature, which it has, but mentally no. I have discovered 80% of the injections were infected with CJD, which I received. Miraculously, I'm still here and the doctors say I have dodged the bullet, but they will never say I am 100% in the clear.
I live a day to day life, which is all I can do and if I wake up and remember yesterday, that is a positive because it is a neurological degenerative disease that takes over the brain rapidly blue to a misfolded protein. CJD is too often misdiagnosed as dementia, Alzehimers or Parkinsons.
As the disease is so rapid, the doctors are always behind, which creates misdiagnosis and then it is too late. Realistically, once the disease has sprung its ugly head, the patient has 6 weeks to 6 months maximum, but recently there has been cases of a person contracting it and it took 3 weeks, all from bumping her toe. One person lasted 18 months, which is extremely rare. The disease attacks the brain and the central nervous system and you end up being immobile and unable to talk, it's called spongelosis.
I found myself in this situation and I thought I would have been dead by now. I'm wanting to do all I can to raise awareness and my story will be published in the papers in the coming weeks to promote my charity walk for awareness of this disease with no cure! I am definitely doing this charity walk to raise awareness and though this disease has taken over my life and I am still not out of the woods, I am turning it around into something positive and helping others and there is a drug called PRN100, which is showing good results for both CJD and dementia.
So please if you can help and support me, please donate as much or as little as you can on my justgiving page. The money will go towards support of the families, patients and with specialist hospices and the palative care.
PRN100 cannot be used yet, even though it is a potential cure.
I am participating in the 80 mile walk with my son Jack and his friend Keiran who is a paramedic and my two cocker spaniels, Mable and Beryl.
Plus the support from my partner Jo, Beth From CJD network and the medical team at the prion clinic.
The walk will take place in the third week of August. Please donate now and to make a huge difference, thank you for your support.