Hyaline Fibromatosis Syndrome has been recognized since the 1800s. It has been called Juvenile Hyaline Fibromatosis syndrome, Infantile Systemic Hyalinosis, and is now referred to as Hyaline Fibromatosis Syndrome. Only about 250 cases have been published in medical literature. HFS is a very rare condition present from birth, though the timing of symptom onset varies: in some children, signs are apparent at birth, while in others, symptoms emerge months later. The body produces a thick, jelly-like material that accumulates abnormally, causing skin bumps, sore joints, and GI problems.
As of now, we do not have clinical trials or a cure that has been discovered to help our children. That is why we need to come together and share our stories to help one another. We have a small but mighty community that I believe can help find a solution to this very sad condition. Dr. Joseph Shieh of UCSF is very passionate about helping solve this puzzle. He is uniting with us to bring hope and togetherness for a brighter future.
If you have a child or loved one with this condition and would like to speak to a medical professional who is familiar with the condition I highly recommend you contact Dr. Shieh
Dr.Joseph Shieh
(415)476-4257
joseph.shieh2@ucsf.edu
