Klinefelter Syndrome

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Klinefelter Syndrome
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Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.

So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.

Your answer may be used in a Mighty story!

#RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache

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How are you honoring Rare Disease Day?

Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.

In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.

📚 About Rare Disease Day: www.rarediseaseday.org

From The Mighty community:

🦓 Rare Weekly Newsletter: bit.ly/3ATKqgm

📍 Living With Rare Disease Group: bit.ly/3snIgTu

From our partner:

🤝 National Organization for Rare Disorders (NORD): rarediseases.org

#RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease

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Scared of being in a relationship cause of a heart condition

First off, ever since I had my heart surgery when I was 16 I’ve been scared getting into a relationship because I really don’t know when my heart is going to stop. On top of that I have Klinefelter syndrome which I cannot father a child. Also I’m afraid that I might get cheated on and won’t accept me because of my health conditions.
#aaoca #Relationships #ChronicIllness #CHD #chdwarriors #KlinefelterSyndrome #HeartDefect #CongestiveHeartFailure #chf #heartfailure

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How do I get an#awesomethemighty , t-shirt?

#KlinefelterSyndrome
#FMS #CFS #ChronicPain #ChronicIllness #Disability #DisabilityTalk #DisabilityAdvocacy #mentalhealthchallenges #ClinicalDepression #PanicDisorder #PeripheralNeuropathy #InvisibleDisability #SupportOthers #CheckInWithMe #TheMightyTakeaway

Hey there everyone. I have been ill my whole life with a myriad of symptoms of illnesses, injuries, and unexplainable pain.
Finally I was diagnosed with a genetic disorder in my mid thirties and 5 years later fms and cfs. And at that same time, I had a massive flare of ??? PAIN?Extreme discomfort, throughout my body? And it has taken me 5 years of extremely difficult challenges and sometimes crushing mistakes. To get me here, sharing this. On this day I feel good after therapy and want to encourage other folks, to keep it going.
Most days are not like this. They are full of pain that I am continuously working through and that is exhaustive and depressing.
But through it all, I want

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Testosterone For Klinefelter Syndrome

I have to take this every month to the rest of my life because of low #testosterone #KlinefelterSyndrome #Cypionate

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