Scleroderma

It took three full years for some semblance of logic to be realized.  When the test revealed the ‘truth’ in 1986, that was another hurdle for me  to overcome.  The news was brief, matter-of-fact, and possibly uncaring – ‘you have Scleroderma’.  Somewhere in the background of my consciousness I thought I heard 2 ½ years to live and no one lives beyond age 50.  At the time I was only 30 and the thought of leaving my young daughter and boyfriend shook my up quite a bit.

Hi, my name is Denyce Le Gendre and this is my testimony.

I am not the one afflicted with this disease but I am affected by it. My mother was diagnosed with Scleroderma about 7 years ago. No one really knew at that time the severity of the situation but we learned quickly.

Being the age that I was, I must admit that I didn’t think much of it. I just thought she was tired all the time because she was getting older. This disease slowly introduced itself to me. I watched it change my mother, her skin, her hair, her face, everything. It really hit home for me the day she stopped breathing right before my eyes. I knew she was sick, I saw her in pain all the time and I thougt at the time that would be it until I thought she left me. I felt like I fell into a black hole, I was overwhelmed with sadness.

It all started when I would wake on mornings. I would sometimes feel my hands, from my fingers to elbow, numb or dead. I had to try and lift the more lifeless hand with the other. Back then, while operating my sewing machine (I was self employed and making clothes, curtains, and draperies), I started feeling pricks in my fingers, like needles and pins sticking me from inside. I went to the doctor, and he told me it could be stress and anxiety - so he gave me some tablets to alleviate them.

Three weeks after, symptoms came back – this time, more rapid than before. This time came swollen fingers and swollen feet. I went to another doctor and he sent me to do a number of different tests, one after the other, with each test coming back negative. I also noticed I was losing weight rapidly. By this time my body could have hardly held up. I had all kinds of horrible pains which were so unbearable that pain killers couldn’t help.

My name is Sue-Ann. I am a young lady in my late 20's and recently found out I have this dreadful disease Scleroderma.

It all started with me feeling very cold all the time. My fingers turned blue and numb, not being able to hold touch or feel my finger tips. This had been happening for quite some time and I never took into consideration that something was wrong.

I drank a lot of hot drinks and kept warm using sweaters and long clothes.

Around 1999 I felt changes taking place in my body.  I thought to myself that this was the age of menopause and the feeling of constant tiredness, hot flashes and listlessness was part of this process.

As the years went by these symptoms intensified with new ones being added i.e. I could not face the sun’s rays.  Sometimes when taking a bath, simply soaping my skin will hurt.  After bathing I felt extremely cold for a long time.  I had to put on a pair of socks and sweat pants for at least three hours before my body regained its normal temperature.  It did not matter if the water I used for bathing was cold or hot.  I  could not go to bed without putting on my socks and sweat suit because I would awake during the night feeling extremely cold.

Recovering from major spinal surgery was a piece of cake compared to what I was about to face. My twins, De Shaughn and De Neisha, were barely three years old in 2003 when I noticed something was wrong with my hands. Picking up small objects and buttoning their clothing became surprisingly difficult. My wrist and fingers felt unusually stiff. ‘Carpel tunnel’ syndrome was the only reason I thought could cause this type of discomfort.

By January 2004, I felt, and saw more changes in my skin. The itching and tightness became daily nightmares. My complexion was, by then, many shades darker. Very quickly there were signs of pigment loss on my scalp, forehead, ears, face, neck, arms, fingers and back. People often asked if I were burnt. I felt ill all the time, but did not know what was wrong with me until June that same year when I was diagnosed with Scleroderma.