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Rare diseases awareness month
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.
Thanks, Nat.
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Comments
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💠 OK Crew, this is IT! 💠
This is something I have “fostered” & encouraged privately and have been waiting for. So let’s all show up for @Nat09 and for the many others who –like Nat & I- “wear the Zebra skin” daily... for us “the rare ones”! ™️
📧 Tagging "my peeps" ⤵
💗 Let's help @Nat09 spread the word & share our stories… for LOVE IS NOT RARE! 💗
@Elsa @firebombmarkus @Foley1362 @Chicken_Slayer @mysticalmysty @Sukanta_Biswas @bearwithme @PummyRaj @kiara_wael @Lola_Pop @Crazy Cat Lad @Jelly_Jenny @Pounawea @QueenMia @Xarly @Cezdiamond @Lim @KitKathySuzyQ @candycrushinit @Spinnifix @gr33n3y3z @Werner_Cichy @BQN537 @Glenn1972 @FaRayha @Scooterpie @Deryck @JethrinaBodina @Acv @DeepshikhaSharan @Yosca @satnam @MataiceAlison @BeckyBubblegum @lulu13 @TheRevenger @Flanje @Betts @popanda55 @leahjane10 @samm_kml @johamilton @Eddie_Sparrow @encantes @Jasmina
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Thank you so much @frenioz00, you’re support and friendship means a lot to me 🥰🐰🦓
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You already know "my story" @Nat09, but I'll be the first one to dive in here so others follow suit.
ℹ️ I was diagnosed of carrying the "ACTA2" gene which leads to Aortic Dissection (AD), which then led me to be diagnosed as high risk for Acute AD Stanford Type A.
AD is considered a rare disease, even more so in women, because it occurs at an estimated rate of 15 per 1,000,000 people per year worldwide.
AD occurs when an injury to the innermost layer of the aorta allows blood to flow between the layers of the aortic wall, forcing the layers apart. The two main types are Stanford Type A, which involves the first part of the aorta, and Type B, which does not.
Without treatment, about half of people with Stanford type A dissections die within three days. Also, because of the varying symptoms of AD, the diagnosis is very difficult to make and when it occurs most healthcare providers will -due to statistics- assume you are having a heart attack or obstruction and treat you with blood thinners, which will actually make you bleed out even faster. Of all people with AD, 40% die immediately and do not reach a hospital in time. Of the remainder, 1% die every hour, making prompt diagnosis and treatment a priority. Even after diagnosis, 5–20% die during surgery or in the immediate postoperative period.
‼️ Like with every and any disease, prevention and early detection are key! Have a full medical check up at least once a year and, if you suspect something is particular about your health and those of your immediate relatives, make sure you get your genes tested. ↔️ As my Doctor says: "Out of all the genes that make you great, there might be one that can literally "tear you apart", not all inheritances a good." (I know, he is a goof, but so am I. Hey, it is all about the silver lightning, right?!)
PS: If you wish to learn more about Rare Diseases or you yourself have been diagnosed with one, check out this link: https://www.diseasemaps.org/ which will not only help you get more info but also connect you with other "rare ones" like me!
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Sorry for what you have to go through, I love your positive energy regardless of what you are going through, I find it’s the best way to keep going, not to say there isn’t bad days. I also like to meditate and do acupuncture ( great for neuropathy). So glad you encouraged me to write about this, it’s so important to both of us and to others I’m sure.🦓🐰🥰
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Hey @Nat09, your post had me in tears. 🤗
I think it’s amazing that you are spreading the word about rare diseases, everyone should know that some of us have problems that you can see and some that you can’t...
@frenioz00, your story is remarkable and I thank you both for sharing them.
When life throws you down never stop getting up again. 🥰
I will lookup the website.
I have had a very bad day today, hence I’ve not been online. But i will share my story with you if i have the courage in the future. 🥺
Sending 🤗🤗 your way!
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@frenioz00, you may have to retry sending those tags because i didn’t get a notification. Saw this while looking through the new discussions list. 🤷🏻♀️
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Hello @Nat09 and @frenioz00 .
I just read your stories and they really touched my heart!
I can understand that everyday you gave your own race in order to survive.
Some people will gonna understand you and support both of you while some others no cause they don't even know what those rare diseases are or they won't give a care.
Also, I understand that might both of you get bullied in the past because you really wanted to live a calm life but you couldn't.
I'm sure that when both of you discovered about those diseases, then your life changed completely.
I want to say that I'm really sorry for what both of you passed and I want to share my support and love to both of you.
I will be here if you need me something!
The same goes and for the people who pass the same too!
Instead of judging, let's support them!
That includes and for both of you!
And @lulu13 , I'm very sorry that you had a bad day.
Can I give you a hug and cheer you up a bit?
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Thank you @Sofia1992 for the 🤗 I’m sending one right back at you. 🤗
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