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Rarely Discussed Consequences of Rare Disease: When Medical Providers Only Think of Horses

silhouette of a mom holding hands with her daughter on one side and her son on the other against a blue sky in a grassy field

Imagine being the parent of a child living with a Rare Disease like CRPS that causes SEVERE PAIN: "The pain of CRPS ranks higher on the McGill Pain Scale than amputation or childbirth when it flares. And yet, physicians do not have much to offer, and it is easy to feel like a medical pariah."

Now imagine: "Unable to get relief for her daughter’s pain, she and her husband made a decision and chose a path to navigate for better medical care. Multi-system, complex conditions are not very well understood. When doctors cannot agree with each other, sometimes parents are forced to decide whom to listen to. It’s a position no parent wants to be in, and a decision few actually feel truly qualified to make."

And then: "This mom needed support and understanding, but instead she was labeled with a nefarious psychological condition and accused of causing her daughter harm by a doctor who was not even trained in psychology."

Tragically, Beata's journey in navigating the healthcare system was simply too much!!

Why am I so passionate about this?? Because I've known and currently know many moms (parents) walking a similar tightrope fighting for their child's life while fearing one day that a doctor or medical provider (as in Beata's case) would disagree with their best efforts and turn on them - report them to Child Protective Services - because they don't know enough about the rare condition or are unwilling to look further.

Having been part of the healthcare system as a Pediatric Social Worker, Patient, and Mom to two young adults with long-term illness, I have had similar fears with my own children. I know of moms that LITERALLY breathe a sigh of relief when their medically complex child turns 18 because the threat of them being taken away is over!!

This heartbreaking article was written by Donna Sullivan, Health Activist and Patient Advocate, who also states: "Parents of chronically ill children need more support. Criminalizing them in complicated medical situations and traumatizing children by taking them from their families is NOT the answer – compassion, education, guidance and more psychological assistance and support for families IS." (All quotations are from Donna's article.)

PLEASE take a few minutes to read this in full and share it!

These are Rarely Discussed Consequences of Rare Disease: When Medical Providers Only Think of Horses. We MUST do better!! 💜💜


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