The story of Sharon
🥺😔 RARE DISEASE DAY, 28 February 2023 ….. RAISING AWARENESS OF A DIFFERENT KIND……. Unless you have a rare, incurable, chronic, disease I don’t think you can truly appreciate the pure hell that patients go through… years and years and years of being told it is something trivial (or worse, it is nothing at all, or perhaps just in your head), even scans and blood tests not picking up things that you expect in this day and age that they should, feeling sick, fatigued, in pain, and often unheard every single day…. And then, finally, a diagnosis (that very often, after having to be your own advocate for so many years, and not giving up on yourself, you actually end up finding online yourself!)… And then expensive treatments that for some can be extremely difficult to get approved, while still coping with the fact that these are only helping to manage your condition… There is no cure…. And because so (relatively) few people have what you suffer from, there is unlikely to ever be one, at least not in your (often shortened) lifetime…. Because no one wants to spend the funds to help so relatively few…. Frankly, it’s a nightmare… After fleeing my own decade-plus of full-time voluntary work with wild elephants in Zimbabwe, I was first diagnosed (amongst numerous other conditions, mostly autoimmune ones) with the extremely rare Scleredema of Buschke Type 2. And now am also being treated for a variation of the also extremely rare Stiff Person Syndrome (in my case, Jerking Stiff Person Syndrome), these days more commonly referred to as the Celine Dion disease…. These – and other Rare Diseases like them – are devastating, debilitating, progressive conditions – even though you may be able to make yourself look well enough on some days.
Be kind. Be understanding. Be supportive. Don’t be dismissive…. You simply don’t know – or perhaps don’t properly understand – what the person you’re talking to or walking past is suffering from. And to those wealthy Philanthropists out there – much more research and better treatments are desperately needed.
#RareDiseaseDay #RareDiseasesDay2023 #StiffPersonSyndrome #ScleredemaOfBuschke #DebilitatingDevastatingDiseases #NoCure #CelineDionDisease #SharonPincottAwarenessOfADifferentKind