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Rare diseases awareness month

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Comments

  • gr33n3y3z
    gr33n3y3z Posts: 9,493 Level 5
    edited September 2021
  • Diamond_Lim
    Diamond_Lim Posts: 150,770 Diamond Diaries Moderator

    You are very welcome and thanks for your information about rare disease day! @Nat09 😊

    So we always be strong and never give up from rare diseases! 💪

  • Nat09
    Nat09 Posts: 12,561 Pro Player 👑

    Thank you for your kind words @Foley1362, our community is indeed full of wonderful people 🥰🦓🐰

    @gr33n3y3z, you should talk about it with your doctor, if you and your doctor think there is a possibility that you have EDS, he will need to transfer you to a geneticist, only they can diagnose it. A common thing with us is touching our thumb down to your arm, I can even bend my little finger back and touch my hand. It’s also what causes some of the problems later in life, early onset of osteoarthritis, joints get damaged because of the flexibility. It was a relief to finally get the diagnosis, finally knowing why all this was happening, there was a reason for feeling the way I did. Now, doctors can’t dismiss my symptoms ( they sometimes do when they can’t find the answer) good luck 🥰🐰🦓


  • BQN537
    BQN537 Posts: 25,070 Pro Player 👑


    Thank you @Foley1362 @bearwithme @firebombmarkus for your kind words if it wasn’t for this fabulous community I know my life would be miserable and boring so I say keep crushing and enjoy 😉

  • gr33n3y3z
    gr33n3y3z Posts: 9,493 Level 5
    edited September 2021
  • [Deleted User]
    [Deleted User] Posts: 11,816 Level 2

    My dearest @Foley1362 , I need to tell you this: you have a way with me. For some reason -earthly or otherwise- you always bring a smile to my face! I can't help but love you for that!

    🔹🔹🔹🔹

    (Many times, you even crack me up! So, watch it! ⚠️ 'Cause... you know...? My aorta might pop if I laugh to hard! 😊😂️🙃)

  • KingChewy
    KingChewy Posts: 13,713 Sweet Legend

    @frenioz00 - 🤗🤗🤗

    Um - about that last part, yeah um no aorta popping please 😳🙏🏻😉🤪


  • _Elsa_
    _Elsa_ Posts: 36,683 Sweet Legend
    edited February 2020

    Dear @Nat09, thank you so much for sharing all of this information with us. I am so touched with everything that you wrote and tears come to my eyes just thinking about the struggles that you go through on a daily basis. I believe that our paths cross in life for many reasons. Sometimes friends come and go and yet this community has brought us all together for a reason. The friends that I am making here in this community have more meaning to me than the friends that live physically close to me. When the Internet first became a thing I had just graduated from college with my Master's degree in Psychology. I only started college when I was in my early 40s. I remember how important it was for me to share my education with others. I started some mental health groups on Yahoo. I found that we didn't have to meet in person to really and truly get to know someone. People always spoke from their heart and shared. The best part about sharing via the Internet was knowing that we wouldn't be judged like we would from friends and family who knew how we were struggling. You can learn more about the true person without ever seeing them in real life. I am so very happy for you that this game has brought you distraction from your pain and also brought you a whole bunch of new friends that want to get to know you better. I am happy that our paths crossed. Hugs to you my friend!

    @frenioz00 our paths definitely crossed for a reason. I felt drawn to you, like you to me. Maybe it was your heart speaking and I was listening. Did you find out who in your family had it? In a way, I assume that being here and helping the players is also a great distraction from dealing with your rare disease. I am far from a religious person but I've heard this expression over and over again “God will never give you more than you can handle.” I guess He believes that you can surely handle a lot. Thank God there are genuine doctors out there that want to learn more and more and be able to diagnose and help their patients who go through all of this. I am now at the age that your mother was when she passed. It's strange how she never had any symptoms and was so healthy and then gone! Do you ever get "an attack" or symptoms that just suddenly come on? ((((hugs)))) to you.

    @lulu13 wishing you the best for today and for the rest of your life!

    @BQN537 I am so happy that our paths crossed. It's so very sad that for all the good doctors there are those that just can't diagnose a symptom. How sad that they took out your appendix because they couldn't find out exactly how you were having those stomach pains. Fortunately though they were able to find out that it was a rare disease. Is it genetic?

    @firebombmarkus even though your illness is not rare it still had to be difficult living with those seizures. Thank God there are meds out there that are helping you. I've heard that sometimes a neurologist can go into the brain and sever something so that patients don't have to live with it constantly. I guess they must do those surgeries for people who have the seizures quite often. It's certainly no way to live. Strength! You found strength through all of it.

    My genetic disease is called keratoconus. I never checked to find out if it was common or not until I started reading and writing here. I just looked online and it says that 1 in 2,000 individuals can get it. The cornea becomes cone shaped and as the cone progresses the vision gets more and more blurred. I have it in both eyes but in my left eye it went into remission and never came out. The right eye has had 9 surgeries, 4 of which were cornea transplants. Over 3 years ago the last transplant rejected and I have no vision in the eye. I can barely see light and barely see my hand waving in front of my face. The last surgery was very painful and they say that eyes shouldn't have any pain. It took quite a long time for it to heal and he had to do some special treatment from an umbilical cord to help it heal. At the time I had no clue who in my family had the gene until my cousin's son (father's side) developed the same thing. So we think that it was my grandfather who carried the gene. Yet it's amazing that I carry strength in me that I might never have had if I didn't go through all those surgeries and live to talk about it.

    So I thank each and everyone of you for crossing my path. My zebra friend says hi. Out of cocoons comes this beautiful butterfly. As the smile comes to my zebra's face when she sees this beautiful butterfly, the same smile comes to my face when I see and read the beauty that comes from all of you here.


  • lulu13
    lulu13 Posts: 3,026 Level 5

    Wow! @Elsa, i have no words.....

    💕🤗💐

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