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Need Your Thoughts For My Rare Disease Day Piece
Hey y’all, I’m working on a column for Rare Disease Day. My topic is “If your symptoms don’t fit the “typical” progression for your disease, where do you feel like you do (or don’t) fit into your disease community? How does it make you feel to be a rarity among rarities?”
I want to get others’ perspectives within the PH community to add to this rare column. If you would like to help, please email your responses and how you feel if your symptoms are “atypical” or PH or haven’t followed the progression perse.
My email is [email protected] – Please send your responses by Wednesday afternoon at the latest. Thanks in advance.
Here it is @cdvol3gmail-com.
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3 Replies
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Anyone else want to offer a few sentences of your thoughts on these questions? I’ll be finishing the column sometime on Thursday, so email me your few thoughts if you want to be included. Thanks in advance, [email protected].
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For a number of years I was misdiagnosed – I was told I had COPD, Emphysema (sp?) or asthma. When I was finally diagnosed with PH I was told I had very rare and expensive disease and 3-5 years to live.
PH was bad enough, then was correctly diagnosed with PAH which was caused by Scleroderma.
I was sure that PAH was the disease that would take me out. Come to realize PH probably won’t – I have pretty stable with PH meds for over 17 years. This Scleroderma has been attacking my spleen, liver, intestines, kidneys, etc.</p>
So … what I am realizing is that my PH progression may not be typical as I am stable there. The fact that I have Scleroderm has to be my focus. What is the progression of Scleroderma? What can I expect? -
@jenc I hope you have received some responses and I’m looking forward to reading this column!
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