My name is Cindy Fuchs-Morrissey from Macon, Missouri. Our daughter Hilary has scleroderma in the form of progressive systemic sclerosis. She turned thirteen years old several days ago and will be in eighth grade for the 2003-2004 school year.
Hilary has an aggressive form of scleroderma with swallowing problems, bowel problems, fatigue, severe joint and bone pain, fevers for no reason, allergies, and acral bone dysplasia of the hands and feet. Her hands and feet are the size of an eleven to fifteen month old child. They have fused and will not grow much larger.
She often has extreme joint and bone pain in her tiny hands, knees, feet and ankles, elbows and shoulders. Her shoulders are popping out like she is coming unglued. She says this is very painful. Some days she feels like a very stiff old lady. She wears hand splints at night, and uses a wheelchair as a tool to get from one point to another so she will not be as tired and in pain from walking on her tiny infant feet. The wheelchair has been extremely helpful in aiding a better quality of life for her.
Hilary has had an esophageal motility test which was abnormal with decreased lower esophageal sphincter pressure and slightly decreased lower peristalsis in the distal esophagus. I really did not need this test to tell me she had a problem swallowing, but I decided to have it done only so the doctors would know that I was telling them the truth. We will never allow Hilary to go through another esophageal motility test, as we really see no point to put her through this again as the damage is done to this little girl who is now a teenager. We feel she is suffering enough without more tests being run.
Hilary's swallowing problem has gotten worse which scares her. Her swallowing problem, like the joint and bone pain, swelling, and other health concerns she suffers from, wax and wane. Hilary is also having very bad bowel problems which is very frustrating.
In November 2001 Hilary was found to have an insulin resistance problem that caused acanthosis nigricans (AN), which is black skin on top of her scleroderma shiny, varnished skin. For the AN, Hilary has used used a medicinal creams that burned her skin. The AN just comes back. It is very difficult to clean the black skin under her armpits. Her neck looks better now, but you can see that the black skin is returning again.
Somebody is always making a comment that she needs to clean her neck as it may become very dark and dirty looking. But her neck is very clean! If the general public was better informed and educated about these types of health problems and really knew what this little girl is going through they would not make such comments.
Hilary also has had seven of her toenails removed as they were very deformed and causing her great pain. This surgery has helped Hilary's quality of life as she does not have to deal with the extremely painful, deformed toenails any more. She did heal, but healed slowly as she does not heal normally. In July 2003 she will be having her three remaining toenails removed. She is looking forward to this so that she will not have to experience the pain that the toenails have caused in the past.
She was on a glucocorticoid for a short time when she was younger which made her gain weight and made her less tired, but made her very crabby! But it did not help her tissues at all. We have opted against other medical treatments and testing at this time. We have just decided to allow nature to runs its course for now, and Hilary is okay with this. We felt this would give her some quality of life.
I believe that Hilary's health problems are a result of my having silicone gel breast implants. In the winter of 1992 I decided to request a copy of my operation records to see exactly what was going on. As I read through them, I felt I was opening a Pandora's box.
I turned eighteen years old in November 1976, and the next week I opted for silicone gel breast implant surgery to correct a congenital deformity of the chest wal (not for larger breasts.) This surgery was a birthday present from my mom and dad, a birthday present I would never forget!
Soon after the surgery, I started having a lot of hair loss. I felt like I had the flu and I was feeling a lot of fatigue and some joint pain. The first Christmas after my implants, I had an allergy to the Christmas tree, of all things. I had never before had health problems or allergies.
My health concerns slowly worsened. In July 1978, I had to have the 1976 implants replaced. They were now rock hard and extremely painful. Unfortunately, both implants had ruptured, but oddly my plastic surgeon never told me or my parents about it. We found out about this in the early 1990s when I requested my medical records.
During the 1978 surgery, the surgeon dropped a bovie (a digital electro surgical generator) on my stomach and breast, and this left scars. Of course, the doctor had to tell us about that, as the scars could be seen.
In the winter of 1978, I had a close capsule release and an injection of trigger pain point anterior axillary line. With that procedure I had a severe adverse reaction to the medication used to sedate me.
In January 1980, my doctor replaced my left side implant, which was my problem side, with a lumen gel/saline breast implant. They did an open capsular release of the left breast with decortication of scar and fibrous capsule; and reconstruction of congenital asymmetry with another silicone implant.
I was under the impression that breast implants would last a lifetime and I thought they had been fully investigated and were considered safe for any offspring and with breastfeeding. But I have since found that breast implants were not fully investigated with the offspring, nor with breastfeeding.
I have learned that Hilary's health problems are probably the result of a silicone gel breast implant birth defect. My maternal grandmother had very deforming rheumatoid arthritis, and died from multiple myeloma. My mom died from multiple myeloma in June 1994.
I have multiple sclerosis (MS), elevated IgM, allergies, asthma, a poorly defined connective tissue problem, and more. What has happened in our family is that a genetically offending trigger has elevated our disease risk by affecting the variants of certain key genes.
We were HLA-typed at Thomas Jefferson University in 1998 in a fetal cells in scleroderma study, as I personally questioned the microchimerism and chimerism with silicone gel breast implants and the variants of certain key genes that could not embrace genetically offending triggers.
Hilary is registered with the Scleroderma Family Registry and DNA Repository in Houston, and the National Registry for Childhood Onset Scleroderma in Pittsburgh and in other more recent studies in molecular genetics.
In May 2003, Hilary had sixteen inches of her very long hair cut and donated to Wigs for Kids, an organization that makes wigs for children who have lost their hair due to chemotherapy treatments, burns or alopecia. So far she has had thirty-five inches cut and donated to Wigs for Kids.
Hilary's hair donation was my Mother's Day present. She wanted to give my hands a vacation from doing her hair every day as my MS has gotten worse. She loves to make others happy with her hair donations, and is hoping to grow it out again to donate it for a third time in high school.
There is so much more to my story I could disclose and would love to tell, someone could write a book about it as I am tired of this mess.
Email: [email protected]
Story posted 6-15-03
Webmaster update 6-16-05 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Alopecia (hair loss)
Causes of Scleroderma
Fetal Cells in Scleroderma
Joint and Bone Pain
Multiple Sclerosis (MS)
National Registry for
Childhood Onset Scleroderma
Photos of Scleroderma Symptoms
Scleroderma Family Registry and DNA Repository in Houston
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