My name is Jelena Ristic and I was recently diagnosed with a very rare and little known connective tissue disorder called Ehlers-Danlos Syndrome (Type 3) after I was severely injuredj by physiotherapy not suitable for my condition which was overlooked. I need treatment, and mobility aids that not covered by OHIP or government assistance. I can get access to treatment in the U.S. Which can do a lot to reverse my injuries, but must pay out of pocket and this is why I need your help. Stem cell therapy can help reverse a lot damage done to my ligaments, tendons and joints and allow me to return to work and life again.
If you read to the end, please don't walk away without leaving a 5 or 10 dollar donation. For the price of a coffee or two, you can allow me to gain access to life changing medical treatment. I will be forever grateful. Also, if you leave me four random words in the comments section of the donation window, I will write a poem just for you using them.
Ehlers Danlos Syndrome is a genetic disorder that causes various connective tissues in the human body to develop poorly and degenerate very dramatically as a person ages. There are 6 types of this disorder affecting various types of connective tissue. The type I have, type 3, affects ligaments and tendons, so that in time, the joints become very loose and unstable. They can dislocate spontaneously, and they degenerate quickly causing excruciating chronic pain and disability.
Early diagnosis, preferably in childhood, is essential so that patients can recieve the right advice for how to protect their joints and the right type of physiotherapy as the wrong type can harm them or even disable them permanently.
In my case, early diagnosis did not happen and it wasn't until I was 36 years old that I started having serious issues with my left hip, 3 vertebra in my lower back and sacro-iliac joints. I could still walk, but I had excruciating and relentless hip, and lower back pain that was initially misdiagnosed as a combination of degenerative disc disease, and sciatica. Despite seeing several different types of specialists including rheumatologists, neurologists and orthopeadic surgeons, when conventional physiotherapy for degenerative disc disease and sciatica was only making me worse, EDS was overlooked. Over the years doctors came to view me as a hypochondriac exaggerating her pain as the microscopic stretching and tears in the ligaments and tendons often don't show up on diagnostic imaging. In order to get opiod pain medication when the pains became unbearable and I could no longer work, I was forced to comply with my doctor's demands to undergo physiotherapy which in the course of 6 weeks caused my connective tissue to become so injured and loose that I also developed some nerve injury and severe muscle atrophy through my left lower back, hip and leg. I was left unable to walk or stand for more than 5 minutes at a time on 6 different medications including painkillers and antidepressants.
Finally, one doctor who knew of Ehlers Danlos Syndrome and listened to my medical history, suspected I had EDS Type 3 and referred me to a geneticist in Toronto. She confirmed the diagnosis and informed me there was no treatment or hope. I would only decline. She expressed regret that the diagnosis had not been made in time as then much more could have been done to preserve my joints and quality of life. But that is only true in Canada where resources to deal with the connective tissue issues of EDS Type 3 and the joint degeneration it causes are non-existant. In the U.S. There is hope as you will read below.
I am 42 years old...I can't even use a wheelchair because it hurts too much to sit due to the location of my injuries. Also, the pressure of sitting too long on my damaged ligaments and tendons could cause me even further injury.
In this process, I lost my beloved job as an English Instructor at Toronto's amazing Humber College, my home and all of my worth and dignity as a human being as social services have refused me funding for any medical care that can improve my condition as well as a stairlift for my parents' home so that I can access a toilet and shower on my own as I wait on a minimum 5 year waiting list for assistive housing. My 72 year old mother who suffers from osteoarthritis and my 75 year old father who suffers from heart disease and diabetes have to wait on me all day for all of my needs as I am ppredominantly bedridden and cannot navigate the stairs to even get a glass of water.
They have also spent all of their retirement savings to offer me some hope in the form of alternative therapies which have happily started to show much promise, but the money has run dry.
This is why I have chosen the Go Fund Me program hoping to raise the funds that I know for certain can dramatically improve my quality of life and even possibly allow me to return to work and become an independant funtioning member of society again.
Here is how...
The first expense would be for a stairlift which is not covered by ODSP (Ontario's disability program), and for which I was refused funding otherwise because there is no "EDS Association" to turn to like there would be if I had Arthritis. Because EDS is so little known, funded, or researched in Canada, EDS patients often fall through the cracks and struggle to get assistance that might otherwise be more readily available to people with other disabilities. This cost is about 15,000.00 for my parent's multilevel home of 43 years. This would make me less of a burden on my parents and help restore a lot of my dignity.
The rest of the funds would go to a combination of treatments that together show great promise to significantly improve my quality of life and even possibly allow me to return to work and become a functioning member of society again.
These include, hyperbaric oxygen treatment which has already allowed me to reduce my painkillers by almost half in two consecutive months of treatment, but the funds ran out. It runs at about 1065.00 for 6 days of treatment. The majority of patients who respond to this treatment continue to improve and maintain results with repeated blocks of treatment.
It reduced my pain, and allowed me to walk a few minutes longer at a time, but there is still a long way to go to get off of all the rest of the painkillers and rehabilitate my connective tissue, nerves and muscles and get some real strength and mobility back.
Stem cell treatment which is offered to EDS patients amongst others, in the U.S. through a group of orthopeadic surgeons working for a company called Regenexx which has patented its own treatments for joint and connective tissue injuries and disorders using the patient's own platlets and stem cells. Since I have many areas to treat, this treatment may cost upwards of 20,000.00 due to the likely need of repeat treatments, travel and accomodation costs.
And finally a new and highly innovative form of physiotherapy called Muscular Activation Therapy or M.A.T. for short. M.A.T. admistred by a therapist with his masters level completed, is much safer for EDS patients because it focuses on activating and rebalancing muscles that have stopped functioning properly due to injury instead of focusing on exercises that strain the joints to build muscle. This would be the last step in the rehabilitation process to regain muscle lost due to nerve, and connective tissue injury. A master M.A.T. Therapist charges between 130.00 to 200.00 dollars a session. It may take two years to fully rehabilitate the muscles so that I may have enough mobility to return to work...or hopefully less.
Last but not least are the group of very important and expensive supplements I need to continue taking to support the formation of healthy collagen and joint health.
$80,000.00 is an ideal goal...it may take less...it may even take more
These are not experimental treatments. They are tried and backed by many studies. However, they are not covered by OHIP for EDS Type 3 patients or, like in the case of the Regenexx program, they are not offered in Canada at all.
I would be extremely grateful and appreciatve of any amount of money I might receive towards my goal to give me the chance to improve my own quality of life as well as prove that there is hope for EDS Type 3 patients. If I succeed in reaching my goal, I aim to use my experience to help raise awarnesss and funds for more research for Ehlers- Danlos Syndrome Type 3 and how it may be treated.
Thank you for reading my story.