When children are diagnosed with a rare condition, no matter what the condition is, it can affect them in so many ways. Not just physically, but mentally. Stress is put on the family as a whole. Financial debt can occur from medical bills, medications, physical therapy, and hospital stays. Different Doctors appointments with different specialist that require requesting time off for work. Living with a rare disease is an ongoing experience for patients and families.
What about the lack of research and no supporting organizations? How many surgeries is it going to take to be the last one? When will the journey be over? If we find the same research the doctors are following off the web and articles, then how can we be sure the treatment they are doing is appropriate just based off what other doctors have done?
What is it going to take for other kids to stop bullying others leading our children to feeling depressed and having to undergo therapy for thoughts of suicide? I am a Rare Disease parent. A parent who has a child with Blount's Disease. Behind closed doors there's more to what people see based of the internet.