I am a passionate writer, student, Girl Guide, volunteer, advocate for diversity and inclusion, patient advocate, and a lover of travel. I dream of becoming a genetic counsellor. I also happen to have 3 rare diseases. I am the rare wanderer. I refuse to let my conditions stop me from living my life the best way I can.
I live with a trio of rare, genetic diseases; Congenital Long QT Syndrome Type 5 (Sudden Arrhythmia Death Syndrome), Solar Urticaria, and Hypermobile Ehlers-Danlos Syndrome.
Long QT Syndrome places me at high risk of sudden cardiac arrest and death. It can also cause fainting and/or seizures. For this, I take medication twice daily, had an ultra specialized heart surgery called Left Cardiac Sympathetic Denervation that removed a large portion of my sympathetic nerve chain (leading to the rare complication of severe 24/7 Post-Surgical Neuropathic Pain), and have an ICD (implanted defibrillator) and pacemaker device implanted.
Solar Urticaria is a potentially life-threatening (anaphylactic) allergy to ultraviolet light, including sunlight. This requires me to protect myself by covering head to toe in UV protective clothing, avoiding all sunlight, and carrying EpiPens. I react through clouds, all year, and through windows. The severe allergy has been treatment-resistant and causes; hives, pain, itching, digestive issues, nausea, severe fatigue (I can sleep for nearly 24 hours after exposure), and lightheadedness.
Hypermobile Ehlers-Danlos Syndrome is a connective tissue disorder impacting all of my joints. It causes severe chronic joint pain, easy injuries, frequent falls, fragile and sensitive skin, dislocations, TMJ (jaw) problems, and more. I walk with leg braces and a cane. I use a wheelchair or mobility scooter for longer distances.
I may be rare, but my rare diseases do not have me. I don’t just want to survive. I want to thrive.
The Rare Wanderer 