My name is Tomas, and I live with Ehlers Danlos Syndrome (EDS), a rare connective tissue disorder that causes severe chronic pain and joint instability. I experience daily rib subluxations, extreme shoulder dysfunction, and degenerative disc disease in my spine. At present, I am unable to work or attend school. Most days, I am confined to bed due to the intensity of the pain. I was enrolled in the social work program at Carleton University, but I was forced to stop because of my health.

I have been in constant, unrelenting pain since the age of 11. Now, at 32, I live in near complete isolation and fear that my condition may never improve. Basic tasks such as showering, preparing food, and cleaning have become extremely difficult. In addition to my physical disabilities, I live with Nonverbal Learning Disorder, ADHD, and Auditory Processing Disorder. These conditions have always made post secondary education and employment difficult to navigate. As my physical health has declined, these barriers have become overwhelming.

Despite this, I still have hope. The Bethesda Clinic in Maryland, a world renowned rehabilitation centre specializing in complex connective tissue disorders, may finally be able to help. Based on initial discussions, the clinic believes they can develop a targeted treatment plan to improve my stability and restore some function.

The proposed treatment would require me to stay nearby and attend the clinic two to three times per week over a period of one to two months. The total estimated cost is approximately $10,000, which includes treatment, travel, and temporary housing. Unfortunately, this care is not covered by provincial health insurance. I am asking for support because this may be my only viable path forward.

In addition to my medical needs, my current home environment is unsafe. I rely on an aging parent whose mental and physical health is deteriorating. There has been recent police involvement due to threats and violent outbursts, which makes my need for a safe and stable rehabilitation environment urgent.

If I am able to access this treatment, my goal is to return to a social work program this fall and begin rebuilding my life. I am deeply committed to supporting people who are neurodiverse and those living with invisible disabilities, communities whose needs are frequently misunderstood or overlooked. Any support, no matter the amount, brings me closer to recovery, independence, and the ability to contribute meaningfully to others.

I am involved with a new and growing club, Disability Now!, at Carleton University, which focuses on supporting students with disabilities and fostering a holistic and inclusive community. I have also contributed to a neurodiversity report with the Provincial Liberal Party of Manitoba. Disability advocacy is central to my values, and if my health improves significantly, I hope to one day pursue a career in law, inspired by women’s rights lawyers and their role in advancing systemic change.

Thank you sincerely for taking the time to read this and for any support you are able to offer.

UPDATE:

I have received formal recommendations from neurosurgeon Dr. Henderson, which further support the need for specialized treatment. In addition, I may require surgical interventions for my shoulders, knee, hands, and possibly my feet. Before any surgical recommendations can be made, I will need to be assessed by multiple specialist surgeons.

On my instagram I make short videos about this and my other disabilities. https://www.instagram.com/tom_ponzilius/