More recently, we noticed that her Alkaline Phosphatase was climbing, but no one could give us an explanation as to why. Our naturopath suggested we try Phos Choline, a supplement for people in liver failure. I thought, Odd, but we can try it. Then we saw some of her symptoms subside, and I wondered to myself, Why is this working? We went to her primary care doctor and asked him about it and he ordered another abdominal ultrasound and some labs. Nothing alarming came back, but her AP levels were even higher than before.
We made her an appointment with a physician who is triple board certified in Internal Medicine, Gastroenterology, and Hepatology. We went in for our appointment, and after listening to her medical history and my concerns and unanswered questions, he ordered a variety of labs. These labs unfortunately showed Autoimmune Pancreatitis 1. This led our doctor to further ponder my daughter’s case. He called us back late one evening in October to tell me that he suspected my daughter has IGG4 Related Disease. This falls under the umbrella of an Orphan Disease because so few people in the world have it. Here is a link to this disease: https://rarediseases.info.nih.gov/diseases/12521/igg4-related-disease
This disease can and will attack every organ she has.
Then we did a liver biopsy to confirm the diagnosis. The liver biopsy unfortunately showed Primary Sclerosing Cholangitis. Here is a link: https://www.liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/primary-sclerosing-cholangitis/
Sounds scary, doesn’t it?
I have done a lot of research on this. Dr. Stone at Harvard/Mass. General Hospital is leading the research around the world on this disease. I flew her out to see him on December 14, 2017 and he confirmed the diagnoses. There is a treatment available, but we will need to fly from Phoenix to Boston at least two more times for it. From there, we’ll need to check her labs and determine when we need to go again.
This is really a life or death issue. If she does not receive the treatment, Dr. Stone told us that she will be facing multiple organ failure, cancers, and more within ten years. She’s only 18.
Your contribution towards our monetary goal will assist us with the cost of plane fare, hotel stays, and food while we are in Boston. Your consideration is immensely appreciated. We are working on covering the cost of the treatment, which can cost $22,000 a month. Thank you in advance.
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