My name is Tomas, and I am 33 years old. I have spent more than 20 years living with severe, disabling pain.

My conditions are Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). In simple terms, the connective tissue that is supposed to hold my body together does not work properly. My joints are unstable and can partially or fully dislocate, sometimes from ordinary movements that most people never have to think about.

I regularly deal with shoulder and rib dislocations, severe spinal problems, and pain throughout my body.

For most people, taking a shower is just taking a shower. Making dinner is just making dinner. Carrying groceries, cleaning the house, or getting dressed are ordinary parts of life.

For me, these things can cause severe pain and exhaustion.

There are days when getting out of bed is difficult. There are days when I have to choose between doing one basic task and having enough energy to do anything else. Much of my life is spent resting because my body simply cannot keep up with what I need it to do.

I have now lived this way for more than 20 years.

My disabilities have also affected my education and ability to work. I currently cannot work and cannot attend school full time. I also live with Nonverbal Learning Disorder, ADHD, and Auditory Processing Disorder, which create additional challenges with learning, communication, and everyday life.

Despite all of this, I am still a student at the University of Manitoba. I have worked incredibly hard to continue my education because I do not want my disabilities to determine the rest of my life.

I want to work. I want to finish school. I want to live independently. I want to be able to make dinner, take a shower, go for a walk, and take care of myself without wondering how much pain it will cause.

That is why getting the right medical care is so important.

I now have an opportunity to receive specialized treatment at Bethesda Physiocare in Maryland, where the team has experience working with complex connective tissue disorders such as EDS and HSD. Their goal is to help improve my stability, reduce my pain, and help me regain some of the independence I have lost.

My spine is one of my biggest concerns. Years of instability and damage have left me facing the possibility of significant spinal surgery. Without appropriate assessment and treatment, I am worried that my mobility, pain, and ability to function will continue to deteriorate.

My spine is not the only problem. EDS affects connective tissue throughout the body, and I need further assessment of multiple joints, including my shoulders, knees, hands, and feet. Some areas may eventually require additional treatment or surgery.

The cost of getting this care is overwhelming.

Medical treatment, specialist assessments, testing, travel, housing, and possible surgeries are expected to cost more than $100,000. Much of this specialized care is not covered by Manitoba Health.

I am also currently dealing with an unstable home situation. I need a safe and stable place to live so that I can focus on treatment instead of constantly worrying about where I will sleep or how I will afford the next step in my care.

I am not asking for help because I want a more comfortable life.

I am asking because I want a chance to have a life.

I want to be able to finish my education. I want to work. I want to live independently. I want to spend time with friends and family without constantly calculating how much pain an activity will cause. I want to have a future that is about more than managing my body from one day to the next.

I also want to use what I have learned from living with disability to help other people. I have been involved in disability and neurodiversity advocacy because I know what it feels like to struggle to be understood. I want other people facing similar challenges to know that they are not alone.

After more than 20 years of pain, I am trying to change the direction of my life.

Every donation helps me get closer to the medical care, stability, and independence I need. Even a small donation can help cover treatment, travel, housing, or another part of this journey.

If you cannot donate, sharing my story can make an enormous difference.

Thank you for taking the time to read my story, understand what I am going through, and support me in whatever way you can.

You can follow my journey on Instagram:

https://www.instagram.com/yourdisabledadvocates/

This is an article CBC has written about this:

https://www.cbc.ca/news/canada/manitoba/ehlers-danlos-syndrome-out-of-province-9.7393474