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Community Voices

Nina @sparklywartanks

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

<p>Have you ever met anyone who lives with the same <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> as you? What was it like?</p>

9 people are talking about this

Community Voices

Evar @lizard_prizm

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

2 people are talking about this

Community Voices

Nina @sparklywartanks

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

<p>How long did it take you to get diagnosed with your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>

18 people are talking about this

Community Voices

CP17 @cindy17

Community Voices

Nina @sparklywartanks

What frustrates you most about living with a rare disease?

<p>What frustrates you most about living with a <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>

20 people are talking about this

Community Voices

Kat Harrison @xokat

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

<p>What’s the “weirdest” treatment you’ve ever tried for your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>

3 people are talking about this

Community Voices

Jamie @jamiestrying

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