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Rare diseases awareness month



  • GotaDunQHGotaDunQH Posts: 20 Level 2

    Thanks for the tag,and just so incredible to see all the love here and all the warriors! I’m a breast cancer survivor...diagnosed in 1997, went through the whole gambit with chemo, lumpectomy, radiation and reconstruction.I was only 40 when diagnosed. My cancer doc told me I’m healthy as a horse except for this. since then I have recurring vertigo which comes and goes but when it comes full throttle, it sets you on your butt. And one other strange disorder I had when I was a young adult was an allergy to cold...cold food and temps. I would break out in hives topically everywhere oin exposed skin and in my throat (when eating stuff like ice cream). Docs could never quite figure out why...but that subsided after a couple of years. God Bless all of you warriors in here!

  • Hey! Would you like to give us your opinion?

  • shafer223shafer223 Posts: 186 Level 3

    Ty for the tag @Diamond Lim

    Hello @Nat09

    2 years ago I thought I had back problems it always hurt and getting worse by the day specialist after specialist noone could pinpoint it then I did an MRI with dye throughout my system. Thats when they discovered I had Avasculor necrosis in my hips. Avasculor necrosis is a disease that suffocates and kills your bones a very painful thing to deal with , 1 week later covid 19 restrictions took affect and non essential surgeries were not permitted for 9 months so I went from welding my guest house to being bedridden waiting for this surgery by the time I was able to have surgery both of my hips had died and collapsed. Well the only thing I had to do during my waiting process was play games on my phone and tablet I dont know if I would have made it if I had not had games to occupy my mind. King was a blessing to me more than anyone will ever know or understand.

    Thankfully I have 2 brand new hips and get better every day.

    Unfortunately I just found out I now have it in my hands which kept me occupied last time

    Stay tuned I'll stay and play as long as my hands will allow


  • aurtheraurther Posts: 210 Level 3

    ohhh my god your areall fighter and inperation to every on in the world i hope YOU BECOME BETTER I BELIVE IN YOU shafer223

  • Nat09Nat09 Posts: 11,494 Ambassador

    Hi @GotaDunQH I’m so glad that you beat cancer, I can’t imagine how hard it must have been for you but happy your through with it. And that allergy, omg, no ice cream 🤯 that one I never heard of but I’m happy that it went away and you can eat cold stuff again 😅 warm ice cream, no thanks 😂

    Hi @shafer223 Gosh, I’m sorry for what you’re going through, do they know what is causing this avascular necrosis. It would be great if you could know the root of it and see if you can prevent it, but I’m sure you already asked all these questions. I know this is a very difficult time for you, I find that watching comedy helps as well, laugh it out 😂 I always feel better after I watch something that made me laugh hard. Meditation also helps, get away from your thoughts even if it’s for a few minutes, looks up mindful meditation online if you want, it can only help 🤷🏼‍♀️ I wish you all the best and I hope it will go well with your hands.😊

    Hi @aurther Thanks for your words of encouragement, it’s always appreciated to have people in your corner wishing you well. 😊🐰

  • penkenpenken Posts: 174 Level 3


    hello Nat! I just read your post on rare diseases month from Feb. I understand EDS a bit, as my husband has been disabled with #MECFS for the past 20 years. I am sad to hear you suffer with chronic pain. 🙏🏻😥There are so many overlaps with autoimmune illnesses. Take care and enjoy the escape of crushing Candy! ☺️

  • Nat09Nat09 Posts: 11,494 Ambassador

    Hi @penken

    Thanks for the well wishes ☺️ There are so many autoimmune diseases and when you have one, it seems like more show up with time.🤷🏼‍♀️ I do my best, it’s all we can do.

    I’m sorry to hear about your husband. I get chronic fatigue, I need a nap in the afternoon and that’s not even as bad as what he’s going through, I can’t imagine how exhausted he must feel, that can’t be easy on either one of you. I hope they come up with a cure for this soon.

    I wish you all the best and your husband 😊🐰

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