I have a dream! Ok well nothing that dramatic but I do have a wish for scleroderma and patients newly diagnosed. I would love for there to be a central landing page of sorts for new patients. One that doesn't scare the ever living hell out of them. On top of that, any doctor giving the diagnosis must give the patient the web address with a pamphlet outlining what scleroderma is and have that pamphlet advertise the same web page.
When I was diagnosed I was given the word scleroderma and then had to wait months to see a rheumatologist. I googled it. Then I shut down. I freaked out. I cried. I laughed. I ran the gauntlet of emotions. Google sucks. It shows the worst of the worst right off the bat. While great for awareness and shock value, as a new patient, it makes you shit your pants.
Given how our emotional states can effect our disease and how long waits can be to see a specialist after being given a diagnosis, it should be required. I still look back at that time and can honestly say that I wish I'd had something, anything to help understand what was going on with me. With the jumps in technology and social media I really hope this is something that gets done someday. So many doctors don't know what scleroderma is though that I think it's something patients will have to undertake. The dermatologist that gave me my diagnosis could have been reading from any one of the web pages that popped up. Scleroderma is a connective tissue disease. There's no cure. Go home now. See your new doctor in six months. Hope that 6 months goes quick. Really? Thats such a common story that it needs to change. I have yet to meet a person who was given their diagnosis in a way that didn't scare the crap out of them.
One can but dream right? I hope that by voicing the idea maybe someone with the know how will see it one day and offer to help. Who knows maybe it'll trigger some sort of great social media revolution lmao! Until then I just hope they know they aren't alone and can find ways to connect with other patients.
Scleroguy
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