Rare diseases awareness month

BQN537

Hi @Nat09

I share your pain as you know I suffer from chronic pain after a routine operation, the doctors/specialists still don’t know the exact terminology for it.I have tried everything I can think of but nothing has really helped. When I was about 7or 8years of age I started to get really bad stomach pain after months and months of testing doctors appointments they gave up took my appendix out and found I had a mecals diva tictom still very rare and hard to diagnose so to you and everybody here is a hug and best wishes to you all my tag is not working sorry guys🐨🦌🦉🐟

mysticalmysty

Thank you for sharing your stories with us @Nat09 @frenioz00 @BQN537 your stories really touched me and I believe you are all strong women, sending you all zebra hugs

BQN537

Thanks @mysticalmysty you really are very kind and helpful, so let’s say yay to the Zebras 🦓👍😊

Nat09

Thanks @lulu13, sorry you had a bad day, hope you feel better tomorrow. We are here for you, you’re not alone my friend 🥰

@Sofia1992 & @mysticalmysty thanks for the support, I very much appreciate it 🥰

@BQN537 our journey is a hard one but that much brighter with our candy crush friends 🥰

Diamond_Lim

Thanks for your sharing your stories about rare disease day! @Nat09, @frenioz00 and @BQN537 😊

I feel touched and almost cried! So we never give up to save our lives from rare diseases. 😊

We take care for health ourselves and stay safe around the world! 😊

Hugs! Everyone! 🤗

QueenMia

Thank you for sharing your stories @Nat09, @frenioz00 and @BQN537 - It is very touching. You 3 are strong, friendly and bring so much good energy to this Community and we are so thankful to have people like you around. Sending you all a lot of love ❤️ 🍒

Nat09

Thank you so much for your support @QueenMia and @Lim, I’m very grateful

gr33n3y3z

Firstly thank you @Nat09 for bringing rare diseases awareness month to my attention and everyone else.

Also thank you @Nat09 @frenioz00 and @BQN537 for sharing your stories of something so personal and scaryl. I can't even imagine what you ladies have and still do endure from your diseases.

It's crazy how life can throw us curve balls and we feel so alone in the dark you know?but somehow there is always a brighter days to come.

I'm really happy that you guys cought theses diseases in time before it got out of control.

Much love.💗💗💗

Nat09

Thanks @gr33n3y3z, thanks for the support, it is so important for me to let people know in our community that they’re not alone in their fight. 🥰🐰🦓

[Deleted User]

Hello dear friends!

I want to thank you all from the bottom of my heart (as "defective" as it is 😉, yet still filled by all your love) for your kinds words, your support & your help on keeping us moving forward come-what-may!

It was quite difficult for me to tell my story, since it has been something I've been dealing with for the last 4 years or so and that I only "discovered" the day my Mom passed away. She was a healthy, strong, 72 year old woman who had the healthiest habits and exercised for 90 minutes every day until the day she passed. When that happened, I was so shocked I spoke to the Doctors that had spent all night trying to save her and, after asking me some questions about my family's health history, they suggested I got screened for the ACTA2 gene (which I did -hence my diagnosis- and which led us to realize that my grandfather -my Mom's dad- had died from the same condition back in the 90's).

Because my condition is hereditary and the ACTA2 gene is a dominant gene (which means that it would most likely show in your "offspring"), I had to make the decision of not having children right at the same time my soon husband-to-be was asking me to marry him. However, what makes this really haunting for me is that -as @Sofia1992 so cleverly and kindly pointed out- I get "bullied" on a constant basis when people ask both my fiance and I when we are going to have children (which just to start with I think is an inappropriate question to ask in the first place, specially if you don't know the person that well). Once the question comes up, if I don't explain all this I get judged and even admonished (people have said "you are not getting any younger, you'd better hurry up" or even and most shockingly "you need to give this man a child because he already has a daughter by another woman"). If I don't want to hear all that, I am kind of forced into explaining why we will not have children together and, trust me, this is not something one wants to be talking about every day.

Anyways, excuse the extra long post and the "over-sharing" but -since I was diagnosed- this has been the place where I've felt the safest at to talk about this (that's quite outstanding, right?!).

As a final note, I want you all to know that I am a healthy, active and happy 37 year old woman and have no physical ailments from my disease that would affect my everyday life. As my Doctor (the loving goof I described earlier in this thread) says: "The good thing about Aortic Dissection is that you suffer no pain, it just comes one day and literally just tears you apart. So enjoy every minute, every hour and every day, for "she" might show up unannounced!". (I love the things he tells me and we share the same sense of humor so, whenever I go for my check-ups with him I bring a little heart-shaped notebook that my fiance's daughter gave me where I write down all his wonderful "quotes".)

PS: Thanks @Nat09 for creating this oasis & thanks for having the guts to do it because when I suggested you did I was in no way, shape or form as courageous as you!