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Rare diseases awareness month
Comments
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Thanks for raising awareness.I know that morale and motivation are very important in overcoming the disease process.
In our culture, it is prayed for people who are sick: May Allah give him health as soon as possible, forgive his family and find healing. 🤲🤲🙏🙏
all my best wishes with you❤
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Thanks a lot sister
Hope we'll again be in the same F5 team again🎊🎉🙌🥳
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This is to everyone suffering from these rare diseases I read these stories and literally feel my heart break for each and everyone one of you I cant remember all the names so I'm not tagging I'm just sending all the love to all of you
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That's new to me (grave disease) I'd have to look that up
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Hi @Kiwi2018 you’re so right, it takes for ever to get a diagnosis. I was first diagnosed with Arnold Chiari ( a brain malformation) in December 2012, about 4/5 years after I started getting symptoms. I still had issues after my brain surgery in March 2014 and knew there was more to it, so after some research, I learned that they finally associated Arnold Chiari with EDS, and I was diagnosed with EDS in 2018.
There are so many suffering and still waiting for a diagnosis, the waiting is the worst. It’s so important to be validated and to know what you are fighting against. My thoughts and prayers goes to all who are still waiting 🥰
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@Nat09 Moi aussi!
I was diagnosed both hyperthyroidism and Graves' eye disease 3 years ago, nearly lost my sight... I'm stable now. Keep you in my prayers, my good friend back in Canada also has fibromyalgia and a degenerating spine... people sometimes don't believe she really has pain because there's no obvious symptoms right? Pray for all of us...
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Thank you So much for the tag Diamond Iim. I am here to speak for the people like me that has parkinson's disease this disease attacks the Motor functions of the brain over the years it renders your body useless because you can't control it I beg people To pay Close attention to any changes in the Motor functions of their body that if you're lucky and catch it in the earlier stages you can be helped I ignored these Signs and now now I'm paying for it so please pay attention to any jerking Of your body such as shaking hands twitching eyes jerking or of the head any kind of jerking function also pay attention to Your body limbs getting weaker I pray that you do pay attention and can catch it in time there is medicine that can help you if it is caught in time I want to show you 2 other people that this has happened to have a look see you may remember them.
And here is a little something to kind of help you No that there is something going on with your body.
I think God everyday for the Pan foundation which is a part of the parkinson's foundation if It wasn't for them I would not be able to pay for my medicine it is very expensive!
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Hi @Nenikapaki thanks for your well wishes 😊 I think I can speak for everyone suffering chronic illness, we know those dark clouds but we must poke our heads out of those clouds and enjoy life in a different way, theirs still beauty if you choose to see it. 😀 and playing Candy Crush is the best way to distract yourself from the aches and pains.
@rare thank you so much for your well wishes 😊
@doncoyote it’s amazing that you’re here, thanks for sharing your story with us. I also do meditation, I find it brings me peace ☺️
Thanks @Glenn1972 for the link, it’s believed that more people have this disease and it’s not diagnosed enough, hopefully, someone can recognize their symptoms here ☺️
thanks @ndaoz @JessicaBilly 🥰
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Hi @janeau_owl I’m glad to hear your stable and you didn’t lose your vision, that must have been so scary for you 😟 Fibromyalgia is so not well understood and it affects your whole body, it’s so painful as well, I wish only good days for your friend and recommend some candy crush on, well, anytime 😂 it’s great therapy 😁
@jojo75 I’m sorry to hear that you have Parkinson’s. It’s absolutely important to not ignore the early signs, sometimes when an illness is caught early, it can make a difference in the future progress of your illness. I wish you the best 🥰
These diseases don’t always happen to someone else, that’s only what we tell ourselves, unfortunately, it can happen to us, be vigilant 😉
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