Before I shut things down here for the summer, I feel the need to share this with all of you. I know I have told a lot of stories this year, but I haven’t talked much about this. Even those of you who know me pretty well may not know that my mother, Mary Van Neste, died last August after a 34-year battle with this horrible disease.
Scleroderma is a chronic, multi-systemic autoimmune disease. It’s name comes the Greek sclero meaning hard and derma meaning skin. Scleroderma makes the body overproduce collagen causing thickening of the underlayers of the skin and damage to internal organs. Symptoms vary from individual to individual and some have mild cases while others more life-threatening. Every organ in my mother’s body was compromised. Shortly after contracting this illness, when I was 2 and my sister a newborn, my mother’s fingers bent inward toward her palms and locked that way. The skin on her face tightened and her lips pulled back exposing her teeth. Her esophagus lost elasticity and gravity became the only way to get food from her mouth to her stomach. Eventually her jaw joints deteriorated and her mouth locked open making talking and swallowing nearly impossible. The top layer of her skin was weak and ulcers developed. One time she was trying to heal 50 skin ulcers at once. At several points during my early childhood my mother was too sick to care for us and since my Dad had to work, we were sent out of state to stay with relatives. Now that I have children of my own and realize what a challenge childrearing can be when you are healthy, I cannot imagine how my mother managed as sick as she was. It’s also very upsetting to even think of sending my baby away for weeks at a time.
Even though her symptoms worsened and life got progressively more challenging as each year passed, my mother’s positive attitude never wavered. My mother needed constant help. She was not able to dress herself or drive, prepare her own meals or wash her own hair. Anything she could do for herself she did, but it would take her three times as long as a healthy person. Although we couldn’t enjoy what I imagine are normal mother-daughter activities like shopping or playing tennis, my mother was always there for me. My “problems” were nothing compared to hers and yet she always listened and gave me support. Even though her unusual appearance made people stare, she wasn’t self-conscious and remained feisty and outspoken until almost the end.
One of the most difficult aspects of scleroderma is that so little is known about the disease. At first my mother felt very isolated since scleroderma is rare and no one in her family or circle of friends had heard of it. She resorted to putting an ad in the newspaper asking if anyone else in the Boston area had scleroderma. Two women responded and the three of them formed a support group. This little group grew over the years and eventually joined with other groups to become the Scleroderma Foundation with about 25 chapters across the country. Today, the Scleroderma Foundation provides support and education to help new patients and their families cope with this illness. They also raise funds for scleroderma research in the hopes of finding a cause and a cure for scleroderma. My mother also made numerous appearances in educational videos and on national and local television programs in an effort to raise awareness about scleroderma.
Many patients when diagnosed are told they only have a few years to live. Statistics like “the average scleroderma patient will die within 7 years” often frighten the newly diagnosed. My mother provided so many patients with hope as she lived for 10, then 20, then 30 years with scleroderma. For this reason, The New England Chapter of SF decided to have a fundraising walk in memory of my mother, in Plymouth on June 28th. As much as I want to “take a break” from scleroderma, I know firsthand how devastating this illness is and how much research funding can help. In the years since my mother was first diagnosed, new treatments have been developed and new theories about what causes scleroderma have been uncovered. Since it is a rare disease it receives no government funding. All research grant awards are dependent upon fundraising events such as this walk. So much has been learned in the past few decades that being able to prevent the onset of scleroderma is a realistic goal.
Just by reading this far, you are helping. My entire life before introducing anyone to my mother I had to give a little speech about scleroderma, including how it’s not contagious and that it’s not hereditary. I always wished I could just say “my mother has scleroderma” and have people understand what that means. I have set up a Firstgiving page with information about this walk they are having, directions and links to register if anyone would like to participate.
Anyway, this is what is on my mind tonight. Just one more day of school Monday—next I will write you a big mushy post wishing you much future success, and a super-fun summer.
