Join Priscilla's Fight Against Scleroderma

 

My name is Andrew Gitschlag. My daughters Addie, Lucy, and I want to tell you about a horrible disease and ask for your help.

 

Priscilla is my wife and the girls’ mom. She’s been in pain and suffering throughout 2021 because of scleroderma. It is a rare autoimmune disease that is debilitating, extremely painful, and gets progressively worse. Her body is attacking itself by overproducing collagen which eventually turns the body to stone. If it continues, it can attack her internal organs and cause death. Because of the lack of research on scleroderma, the most promising treatments are not covered by insurance. But with your support, we have a chance to fund her treatment to fight this disease.

 

My Partner in Life

Priscilla is my wife and my best friend. I still remember meeting her at the University of Miami in 2001 and seeing her beautiful smile for the first time. We had only just met, and she was already giving me a hard time, cracking jokes, and making me laugh. Her humor drew me in, but her warm heart made me fall in love. She is my better half. We have two wonderful daughters, Addie and Lucy, who are now preteens, which is scary. And they are coping with their mom's disease as well as can be expected. 2021 has been the most difficult year of our lives, although the nightmare started last year.

 

The Beginning of the Nightmare

When Priscilla woke up last August with swollen hands, she made light of it. However, the next day they were still swollen. Every single morning since then they’ve been swollen. That was the start. Her symptoms have only escalated. Her hands turn blue, and then completely white, a phenomenon called Raynaud’s. She can get frostbite if she doesn’t keep her hands warm enough, regardless of the temperature outside or inside. She uses hand warmers to keep her hands warm and prevent frostbite. She’s gotten some odd looks this summer because she has to wear mittens so she doesn’t get a Raynaud’s attack. Even in the 90-degree summer heat!

 

The Pain of Scleroderma

Since July, she has been unable to straighten two of her fingers. There are hard nodules on the back of her hands. There are more forming and beginning to spread up her arm. Her skin on her hands, feet, and face have become discolored in what doctors refer to as hyperpigmentation. It’s not normal.

 

It is difficult to hear how bad she feels every single day, especially since not that long ago she was active, energetic, and full of life.

 

She gets fatigued after going up our stairs, which is not typical for her. She used to bike 15 miles a day and lift weights five days a week. She was able to engage in these tough work outs until February of this year, when her body just couldn’t do it anymore. It was devastating both physically and emotionally for her because she’s always been an athlete. It was a part of her identity. She now struggles daily to find the energy to do routine things because of her constant feeling of fatigue and being unwell. If you or someone you know has had covid, that experince of extreme fatigue, of not haing any energy, that is what she's experienced for the past six months. Unfortunately, it's not just the fatigue but the constant pain. It starts the moment she wakes up and doesn't go away.

 

Doctors don’t understand scleroderma. It’s not like cancer, where there are well established treatments. They don’t know what causes scleroderma. It’s one of the rarest and deadliest autoimmune diseases. It usually ends in death 5-10 years later, and it predominately affects women in the prime of their lives, between the ages of 30-50.

 

Endless Doctors

We have seen 15 (yes 15!) different doctors and counting. We’ve traveled to the scleroderma specialists at the Medical University of South Carolina (MUSC) in Charleston and at Duke that our local rheumatologist referred us to. Both specialists have confirmed that she has systemic scleroderma. Both have said it’s a progressive disease and will get worse. So, Priscilla began the trial-and-error process of various immune suppressing drugs. These are drugs from other areas of medicine because there is no drug that is used to treat scleroderma. So few people get scleroderma that drug makers don’t spend much time trying to find a cure because the return on their investment is not profitable.

 

Nothing Has Worked

The drugs are not working. And the ones they prescribe for pain haven’t relieved her pain at all. In the past Priscilla was happy and always upbeat. Now I’ve stopped asking how she is doing because it’s never good. It’s sad because it's hard to hear how bad she feels every single day.

 

There are two other therapies we have yet to try. One of them, a stem cell transplant, isn’t recommended. Duke is leading the charge in this one and that is the reason we went there. However, Priscilla doesn’t fit the profile of patients that have shown success with it. The other treatment, plasma exchange is promising.

 

A Promising Treatment

Plasma exchange is the therapy I’m asking for your help with. We are trying to get insurance to pay for it, but as of yet, they will not. It is expensive, but it’s been used for decades. The cost is $5,499 per treatment, and Priscilla will need 16 treatments. We are draining our accounts and going into extreme debt because it is worth it to have her not in pain and put her scleroderma in remission. The results are promising from other patients with scleroderma who have used it. One man in Wisconsin has used it for thirty years! It has allowed him to live again! But because there are so few people that get scleroderma, there are not enough clinical trials on any of the treatments to get statistically significant, double-blind results.

 

The tissue damage will be less if plasma treatment is started early. Priscilla has tried a number of drugs, but they have all failed her. The immune suppressant drugs have not worked. Plasma exchange can stop the internal damage and put her into remission.

 

We Appreciate Any Help You Can Offer, No Amount is Too Small

Please help us give her the treatment that will save her life.

 

Your donation will help. I know times are tight these days, but every dollar makes a difference and helps Priscilla get the treatment to live again. Your donations help more than you realize. Please help make a difference in her life and share this page with as many people as you can. Together we can get her the treatment she needs.

 

From the bottom of our hearts, we thank you.

 

With Love,

Andrew, Addie, and Lucy