Why does HFS happen?

Hyaline Fibromatosis syndrome happens when a tiny change in a gene called ANTXR2 makes the body create sticky material that builds up, causing bumps, sore joints, and GI troubles.

What medication has helped your child?

Flora has several medications, Baclofen and Gabapentin have helped relax her muscles and ease nerve pain. You will need to reach out to a health professional for advice since each case is different. She is unable to lift her arms, so Nystatin topical powder is often applied under her armpits to help with yeast infections. Flora also has protein-losing enteropathy. She is currently drinking Pediasure peptide 1.0 to help keep the protein she is losing. Again, I urge you to consult with a medical professional. I just want to share what is working for us.

Does physical therapy help?

Yes! Each child has a limit, but it always helps to get your little one moving as much as they can tolerate. Flora has very little movement but can do many things with the movement she has. Also, splinting of the hands and legs is recommended.

What doctors are recommeded?

As mentioned before, Flora has 15 doctors. This is because the entire body and joints are affected. Here is a list of doctors.

-Genetic

-Orthopedic 

-Rheumatology

-Dermatology

-Ear, Nose, and Throat Doctor

-Neurology

-Pain management

-Immunology

-Primary care physician

-Gastrointestinal

-Oral surgeon

-Special Dentist

-Podiatry

-Optometrist

-Spinal Doctor 

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