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Featured Patient Stories

 

Thank you to the amazing and courageous people below for sharing their often times difficult journey in dealing with dysautonomia! Click here for instructions on submitting your story.

 

In an effort to make searching through this page easier, we have abbreviated the dysautonomia and associated conditions:
-POTS: Postural Tachycardia Syndrome                  -MCAD: Mast Cell Activation Disorder
-NMS: Neurally Mediated Syncope                          -EDS: Ehlers-Danlos Syndrome
-OH: Orthostatic Hypotension                                  -PAF: Pure Autonomic Failure
-GP: Gastroparesis                                                  -SFN: Small Fiber Neuropathy
​-JHS: Joint Hypermobility Syndrome                       -CFS: Chronic Fatigue Syndrome
Journal Articles Social Media Map Brochures Patient Stories

Abbie

Age: 14
​Diagnosis: POTS
"In my condition, it is all things I cannot control. I have my good days and my bad days, but their are always some symptoms present. I am a very changed person after becoming sick. However I am still Abbie"

 

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Miss Nikki Ann

Age: 36
​Diagnosis: HyperPOTS, PAF, GP
"Trust your gut instincts about your symptoms.  Arm yourself with knowledge and people who are willing to learn about your illness (you may even find yourself teaching many of your doctors about it!)."

 

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Linda P.

Age: 47
​Diagnosis: POTS, MCAD, EDS
"Find yourself a doctor who knows about your condition, not just what it is but the ins and outs of it, respects your individual symptoms, believes you, and whom you have a good communication relationship with.  Learn all you can about it yourself, learn your own triggers, limitations and what is most helpful to you."

 

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Emily K.

Age: 20
​Diagnosis: POTS
"Do not be ashamed of your condition, and do not let it consume you. Yes, it is hard, but I like to believe that we are strong and we were given this life for a reason. You have dysautonomia, but it does not have you."

 

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Kenzie

Age: 17
​Diagnosis: POTS, EDS
"Your life will be hard, and there will be times when you will want to give up, but remember life goes on and there is at least one thing in your life that makes life worth living. For me, that is my mom, grandma, and pets."

 

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Peter aka "Sociable"

Age: 60
​Diagnosis: POTS, EDS
"Knowledge is power. Learn how your body works and how you can learn to make that work for you rather than against you. Also remember there is strength in numbers so join in groups both to be helped by others, but importantly also so that you can share your own strengths with others..."

 

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Jane S.

Age: 57
​Diagnosis: POTS, SFN, OH
"In mythology, a phoenix is an immortal bird that, when it dies, bursts into flames and is reborn from its own ashes. "To rise from the ashes of the phoenix" means to make a miraculous comeback."

 

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Sierra

Age: 23
​Diagnosis: NMS/NCS
"The world may be mostly deaf to uncommon/invisible illnesses but you can still be heard. Fight for yourself and never settle for less than you deserve.."

 

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Rachel G.

Age: 19
​Diagnosis: POTS, NMS/NCS
"Never give up! Eventually, you will find a treatment that will work for you! It might not cure you, but it definitely will help. Finding that one medicine that does wonders for you is the best feeling in the world!"

 

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Joanna D.

Age: 21
​Diagnosis: POTS, JHS
"Dysautonomia may take a lot away from me, but it can't take away my faith, hope, and awesome support system! POTS can be psychologically damaging as it's easy to become depressed when your body feels damaged so I give myself one pity day a month where I'm allowed to sit around and feel sorry for myself. Every other day is spent trying to enjoy life and doing what I can."

 

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