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    Post surgery question ? #ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #MedicalZebra

    I have made it 2 weeks since my ankle surgery to repair a few tendons and ligaments. I got my stitches out today, 30 total. I now have steri strips to continue healing of the incision. I have a few smaller blisters along the incision and one larger on my ankle bone where I've been having more pain from my walking boot. Surgeon said it's normal and nothing to worry about just to watch it. Has anyone had this happen ? #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome #Surgery #Mobilityaid #Zebra

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    Could really use a friend #EhlersDanlosSyndrome #Ankle #hypermobileehlers-DanlosSyndrome(hEDS) #MedicalZebra

    I'm on day 4 of surgery recovery and have reached regret. It's been a really hard few days my nerve block started wearing off right after surgery, needed lots of pain meds when i woke up . I was in so much pain should have gone to the ER that night. Talked to the surgeon got different meds and did some adjusting of my ankle which made the pain tolerable. But now I'm stressed that I've made a mistake having surgery. The scar is going to much bigger than originally because there was more damaged than what showed on the mri so pretty much multiple surgery In one incision, I won't see it till next Wednesday and I'm starting to freak out #Anxiety #PanicAttacks

    32 reactions 11 comments
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    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

    Would love to hear your experience! Feel free to share in the comments below.

    P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients: rarediseases.org

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    4 reactions 12 comments
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    Searching for a diagnosis and treatment

    I have all the symptoms of #PosturalOrthostaticTachycardiaSyndrome including the pulse rate spikes when I change position and frequent near-syncope. I just had a tilt table test and the doctor and cardiologist both said it’s not PoTS because my blood pressure is going down instead of staying the same. Now they are saying they might not be able to diagnose me with anything, I will just need to monitor and avoid my symptom triggers. This is what I have been doing for years and it is not good enough! I am so limited in my activities and work. I am feeling so discouraged. Any advice or helpful information out there? #Undiagnosed #MedicalZebra #AutonomicDysfunction #LivingWithPOTS

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    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    1 reaction 21 comments
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    What frustrates you most about living with a rare disease?

    It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

    Let me know in the comments below 💌

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

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    What’s the “weirdest” treatment you’ve ever tried for your rare disease?

    I was diagnosed with my rare disease (SUNCT Syndrome) a few summers ago. There are really only two treatments that are currently proven effective for the headache condition: anti-seizure medication and high flow oxygen. I am currently taking the meds (it’s helped in lessening the frequency of the attacks, yay) and I tried the oxygen for a year (but it didn’t help in the way I needed it to).

    Getting the (very large) oxygen tank into my house was quite the process and required more phone calls than I’ve ever experienced for a medical issue (yes, even more than 14 surgeries worth!). Because of the flow rate, I was only able to do it for 15 minutes at a time. I typically experienced lowered pain during the breathing treatment, but my pain skyrocketed the minute I took the mask off. At the end of the day, the high monthly cost of renting the tank just didn’t make sense for the minimal relief I experienced.

    I’m curious what the “weirdest” treatment is that you’ve ever pursued for your rare disease diagnosis?

    #RareDisease #ChronicIllness #Parenting #ChronicPain #MedicalZebra #EhlersDanlosSyndrome #Spoonie #SUNCTHeadache

    1 reaction 3 comments
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    Chronic illness gift basket help?

    Hi all! A friend of mine (21 year old female) is having a really rough time with her chronic illnesses lately (more being diagnosed and in & out of ER) and her friend and I are getting together to make a care package to surprise her with. She has POTS, EDS, and more. Does anyone have any ideas that would be inexpensive? I’m currently unable to work and have no source of income 😅. #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Gifts #PiccLine #MedicalZebra

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    Be proud of your spoonie achievements. #Spoonie #MedicalZebra #ChronicIllness

    Be proud of every one of
    your spoonie achievements, everyday.

    Your spoonie achievements aren't
    societal norms,
    but they are YOUR achievements,

    & they are the battles
    you are winning. 👏🏽
    - @mrscoleo33 a reminder for myself & others. Be proud of how you handle your conditions, life & spirit. You're always doing the best you can. It doesn't matter what others think, they will never understand because they aren't living your life.

    4 comments