My name is Faith and I am 67 years old and I suffer from Recessive Dystrophic EB. I found out about my disease when I was 21, that’s when they gave it a name. Up until then I was sick and the doctors and I had no idea why. After we found out what it was, the disease slowly progressed. I entered Upstate Medical Center after being comatose for 6 weeks, my previous doctors couldn’t help any longer. There they biopsied my leg to tell exactly which form of EB I had and it came back positive for RDEB. From that point on, Upstate became my hospital. I loved the doctors; they treated my wounds with silvadine and padded the bandages very well. However, things slowly got worse, it seemed like no matter how or where I put pressure, i would break out in black ugly sores. Sometimes they were so bad that I needed surgery. Slowly other problems began, my esophagus was slowly getting smaller due to scar tissue. At the age of 39 I lost all of the right arm and then six months later the disgusting disease decided to get into my right leg which then had to be amputated above the knee. Six years later I lost the left leg above the knee.
When I was 60 I lost almost all that was remaining of my left leg. I would not let any of my legs and arms to be removed without a fight (guess I lost), then the most devastating amputation I had was my left hand. Prior to this I had to have the baby finger removed to try and save the hand then the two fingers, to no avail.
I may have lost, but I am not angry. God has a purpose for the sun to set and rise he also has a purpose in this ugly disease. I do not want babies or young children to live the life I had to, at 67 years old I have had 11 amputations in just 4 limbs. My main ambition today is to help with the fight of EB. God will help everyone and anyone who helps us fight for babies, like little Easton. God I pray every night let me suffer a little more and take the pain from these innocent babies like our little butterflies. I also know that we do not put God in that position in other words we do not tell him what happens he tells us what happens. I believe that there will be a cure because that is what faith stands for… not my name… but the faith of a mustard seed.
I’m generally very happy outgoing person, I live day to day what ever comes I know I’m in his hands and I am going to heaven when Jesus calls me because you see I feel like I’ve already been threw hell. So, smile take courage we will soon see a cure for our babies and little ones. I feel that God allows me to encourage others when they are down and I try to comfort them. My story could be alot longer but i think u get the drift of life with RDEB I just wish that god helps me to live just long enough to see my prayers answered to find a cure.