Rare Stories: Meet Allison

Rare Stories: Meet Allison


Imagine someone gently pulls on your arm to get your attention. Only, instead of turning to the person, intense pain erupts as your shoulder is pulled out of place from the simple movement. A situation like this is Allison’s reality and is what led to a doctor referring her for a connective tissue disorder evaluation.

After five years of fighting symptoms, she received a diagnosis of Ehlers-Danlos Syndrome-Hypermobility type (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that causes large heart rate spikes upon standing, among other symptoms. Allison describes EDS as her “joints constantly not being in place” and often jokes that she is like the mom from Disney’s The Incredibles – super stretchy.  This flexibility and joint instability leads to pain, which she often compares to arthritis when describing the condition to adults.

The initial time after diagnosis was particularly challenging for Allison, as she “felt so held down by [her] diagnosis.” Simple tasks, like going up the stairs, became difficult and were a constant a source of frustration.  Although she spoke of these challenges, her fighter spirit was present throughout her interview.

She especially wants others to know she isn’t looking for sympathy or pity when she talks about her conditions.  In her own words, “I’m still strong and kicking butt!” Her rare disease has given her strength and perseverance that helps her conquer her unpredictable days with hEDS and POTS. Allison turns each day into a new challenge for herself, “like what will today bring? You never know whats going to happen, but you can mentally prepare yourself for anything.” Her day to day health management consists of taking a variety of vitamins (deficiencies are common in hEDS/POTS) and using braces or ice packs to help control joint pain and dislocations. 

Allison has learned to not let her conditions drag her down, but instead lets them empower her. She recently began openly talking about her conditions and advocating for others with chronic illnesses. It takes a lot of bravery to open up about the hard moments of our lives, and I applaud Allison for helping others with her experiences!

As many readers know, I am a strong believer that “it takes a village” to be a human in this world, rare disease or not.  Allison says her village consists of her amazing friends, family and boyfriend – who all support her through the good and bad days.  She also gains strength from online communities of other warriors with her conditions, who give her a sense of comfort in knowing she isn’t alone in this fight.

Allison works hard to conquer life with rare disease, and believes the word “UNSTOPPABLE” describes her best. Since her diagnosis, she is most proud of herself for being elected the SkillsUSA Virginia Vice President and has also excelled in many state and local graphic design contests! Nothing holds her back from her dreams and she often refers back to the quote “be fearless in the pursuit of what sets your soul fire” to remind her to bravely pursue her passions. 

Adopting this fighter mentality after a rare disease diagnosis certainly takes time, and Allison wants anyone newly diagnosed with hEDS or POTS to know that:

    “getting diagnosed can sometimes feel like the end of the world, or that your whole life is going to change. But that isn’t always the case. Things will get better and being sick does not mean that you are weak or powerless.  You’re still beautiful and amazing and can do anything you want.”  

You are certainly unstoppable, Allison and I thank you for your bravery in sharing your story! #FightOn


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