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Hello everyone, I want to share this with you guys because it’s something that is extremely important to me and since February is Rare Disease awareness month, it’s the perfect time.
On February 29, it will be rare disease day. Did you know that there are 300 million people living with one or more of over 6000 identified rare diseases, that’s 3.5 - 5.9% of the worldwide population. Of those, 72% are genetic and 70% of those start in childhood. It can take a long time to be diagnosed because the symptoms are vague and can very from one patient to the next. Many remain undiagnosed, with no answers and are left frustrated. Most have no cure but can only manage some of the symptoms and are left suffering with severe chronic pain and no quality of life. In medical school doctors are trained with this phrase “ When you hear the sound of hooves, think of horses, not zebras “ That is why the zebra is used to represent people with rare disease, we exist as well.
I was diagnosed with Arnold Chiari and Ehlers Danlos, it took a long time before getting diagnosed, only when my symptoms got so bad and I had trouble doing every day things, I would loose my balance, really bad vertigo, every time I would laugh or cough, bend over, anything that put pressure in my head, I would get a sharp pain in my head. No wonder, part of my brain ( cerebellum) was down in my spinal canal, ouch 😣. I had surgery but things progressively got worse, now all my nerves hurt as well.
CANDY CRUSH IS AWESOME, it’s fun to play and the people in the community are the best. When I play candy crush or just playing games in the community it allows me to focus on something other then the pain, helping in the community, it’s at least something I can still do, my illness can’t take that away from me, my illness has taken so much away, I can’t work, clean the house, sports...
I’ve had the opportunity to speak to some of you who suffer as well, some of you who enjoy this wonderful game as a therapeutic escape, that’s why, for me, it’s important to share this with you and bring awareness to rare diseases in the hope, one day, we will find answers for those of you waiting and cures for all.
I believe there are a few of you out there, candy crush zebras. I’d love to here your stories or if you have family or friends who suffer ( it’s not easy on you guys, we depend so much on you) please share, I want to listen.