Friday, June 30, 2017

Dear Blount's Disease

Dear Blount's Disease:

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.

(Image credit, D. Laws)
The reality of when we witness our child trying to cover their scars with a pen then trying to scrub away their scars in the bathtub. 

(Image credit, Anneliese)
The pain that comes associated with this condition and no prognosis. The chance of reoccurrence and deformity to their legs along with leg length discrepancy. The chance of developing osteoporosis as they get older or needing knee replacements. 

( Image credit, Anneliese)
The hope that this surgery will be the last one. Wishing you could take your child's place on that operating table. The different tests that are done to rule out other conditions that may or may not be an underlying factor with Blount's. 

So I write to you Blount's Disease, and I share the reality that children face with this condition in hopes that more awareness and research can be brought to this condition. I write to share as a mother who has slept in a hospital chair, cried from fear and joy, who has laid my child in the arms of a surgeon, I am a strong advocate who has found strength when there wasn't any left. Our journey may not be over, but no where in our story will it ever read we gave up. 

A Rare Disease Parent. 

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