Debbie
Hi, I have a 6 year old son with RF which then attacked his central nervous system resulting in involunatary movements, migrating joint pains( no redness or swelling), chest pain ( all heart scans normal), fatigue, shortness of breath, emotional lability.. the list goes on. He is currently on PenVk twice per day. I would love to correspond with anyone suffering from this disease ( RF or SC) or has a child with this. I have not been able to find any support groups for RF until here...this is not as rare as the Dr'.s portray it, what in my opinion is rare is Dr's. being able to promptly diagnosis this. Blessings!