Pearl’s Story
My name is Pearl and I live in Gants Hill, Essex. I first noticed these weird 'spots' on my arms about 25 years ago. At first I wasn't bothered by them as they didn't itch or anything but as time went on and they spread to my legs, a couple on my right breast and one large one on my bottom, I began to worry that they would spread to my face and went to the doctor.
I was referred to a lovely dermatologist named Dr. Alexander at King George Hospital in Goodmayes, near were I live. She was really excited when examining my 'spots' and asked if she could take a biopsy of the one on my bottom. This was duly taken and evidently sent to America where it was grafted on to a monkey (I never got to find out what happened to the monkey!!!).
She subsequently confirmed that I had Degos Disease and told me that only 45 people in the whole world had ever been reported as having this syndrome. I was later to be one of the 'exhibits' in a dermatologist convention that was held in a hospital in the East End (don't remember which one). Dermatologists from all over the world attended and there were 44 patients with unusual skin problems.
There was a little book produced listing all the names of the various skin diseases so the dermatologists knew what unusual subjects were there. However, they all crowded round my bed saying things like "I have been a dermatologist all my life and have never had the luck of seeing someone with Degos Disease" or "No one will believe back home that I have seen a patient with Degos Disease", it made me feel quite special.
Anyway, Dr Alexander tried various experimental tests on me, including a pill which I can't remember the name of, but this gave me the most horrendous headaches, the type that made you want to hit your head against the wall to relieve the pain. I was only able to stand that for a couple of days and had to give up taking them.
Another test that I took involved taking a sample of blood before having that arm band put round my upper arm that is used for testing your blood pressure. This was pumped up to be quite tight and then just left on me for about ½ an hour; I had to keep pumping it back up to a certain level if it fell below that mark. My arm went red, mauve then blue; it was a really uncomfortable experience. A blood sample was then taken again after they took the arm band off. I don't really know what this test proved except that it had something to do with the platelets in the blood.
Eventually, without really taking any medication etc., my Degos Disease 'spots' just stopped appearing and the ones I had got smaller and smaller until they almost disappeared. If you look closely on my arms and legs you can still see very tiny, white marks which are the only signs left to show I had Degos Disease.
I would say that at it's worst I had about 30 or more 'spots'. Dr Alexander told me that the only thing they knew about Degos Disease was that it would not appear on the palms of the hands, the soles of the feet or the face. Maybe after all this time the doctors know a little more about this strange syndrome and I was extremely surprised when reviewing this web site to discover how many more people have developed it since I became number 46 with the disease.
Pearl Ross-DalePage last modified on 22 September, 2008
