See Alike in...

Alike App

Browser

kayt

687d

Some people in my life have said a lot of the medical issues i have going on may be due to undiagnosed ehlers danlos syndrome. im scared to ask about it with my drs

Top reply
    • NonbinarySlytherin

      606d

      @NonbinarySlytherin I know someone with it and is it scary? Sometimes. But for the most part it is fascinating. Like what they can do with their thumb or the stretchiness of the skin. It is fascinating. To know is better than not knowing. Also, I know for Oregon there is a Facebook group that video chats monthly for support and resources. Ask your doctor to see a specialist and or geneticist to get tested. For my test it was just can you do blank or do this. That was it. No blood test nothing. If you don't have EDS you may have things like Chiari Malformation and or HSD (Hypermobility Spectrum Disorder). You Are Not Alone. Trust me it is so much more common but most don't know it exists.

    • goblin49

      607d

      I would definitely look into this more and approach your Drs about it, but I would strongly suggest doing a lot of research on your own first regarding this condition; many physicians don't know a lot about EDS so it is to your benefit to know what your getting into and how to discuss it with your Dr.

    • NonbinarySlytherin

      687d

      Don't be afraid to ask. If you do then congrats. If you don't then 🎉 congrats. You can do it.

      • NonbinarySlytherin

        606d

        @NonbinarySlytherin I know someone with it and is it scary? Sometimes. But for the most part it is fascinating. Like what they can do with their thumb or the stretchiness of the skin. It is fascinating. To know is better than not knowing. Also, I know for Oregon there is a Facebook group that video chats monthly for support and resources. Ask your doctor to see a specialist and or geneticist to get tested. For my test it was just can you do blank or do this. That was it. No blood test nothing. If you don't have EDS you may have things like Chiari Malformation and or HSD (Hypermobility Spectrum Disorder). You Are Not Alone. Trust me it is so much more common but most don't know it exists.

    • Secret23

      687d

      Don't be afraid to ask about it! Heck, as I type this I'm at my orthopedic to figure out if I have Ehlers Danlos myself. Definitely work with your doctors to find out if there's more going on.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion