Julia's Battle with Ehlers-Danlos Syndrome
Donation protected
My story:
I’m Julia and I just turned 26. Originally from Germany, I now live in beautiful Perth, in Australia and just started my second year of uni, studying Computer Science. I love every minute of it, and earlier this year I was offered a job at uni as an ambassador, which means I get to share my passion for computer science with high school students and teach them how to write their own programs. I also volunteer at Scitech, a science exhibition where kids can discover the world of science, and on Sundays I am part of kids ministry at church. I am so grateful for these opportunities and there is nothing I would rather do.
What’s going on:
I was recently diagnosed with classic/hypermobile Ehlers Danlos Syndrome (EDS) after countless joint dislocations, broken bones, three knee reconstructions and other complications. As a connective tissue disorder, EDS results in faulty connective tissue. Connective tissue is like glue that is meant to hold everything in the body together, but in the case of EDS it doesn’t. This results in weak ligaments and tendons, instable joints that dislocate frequently, fragile skin, bones and blood vessels- it is affecting most of my body and causes extreme levels of pain. The cruelty is that it is slowly making my body fall apart and there is nothing that can be done to stop it. I have had countless hospital admissions to manage complications such as a brain inflammation, infections, extreme levels of pain as well as several surgeries. I was also diagnosed with Narcolepsy, which is a sleep disorder that leaves the body unable to manage sleep-wake cycles, resulting in a 24/7 jet lag level of tiredness. EDS is lifelong. There is no cure, so medical support is palliative. Because my joints have become too instable and dislocations too frequent, I am using a wheelchair to get around. Losing my mobility was huge, but it has drastically reduced the number of dislocations and pain levels so that I was even able to start uni again last year.
Through all that has been going on, “Can’t” has never existed in my vocabulary… until I recently started having muscle weakness in my eyes, arms, legs and neck and simple things became impossible; no matter how hard I tried, my body wouldn’t work. An episode of breathing trouble recently landed me in hospital for three weeks, I am having double vision and it is now also affecting my ability to swallow. Due to the muscle weakness in my arms, my mobility is heavily impacted, and it has become quite a struggle to move my wheelchair, making it very difficult to go back to uni or work. I am so grateful for the things I get to do, however, with all these deteriorations I have had to put most of my life (including commitments) on pause.
What has been highly suggested to me to regain a level of mobility is a 'Power Assist', a servo motor that gets mounted onto the wheels and gives support when moving the wheelchair. After seeking specialist advise on it, this particular one https://www.pushmobility.com.au/collections/power-assist/products/twion-power-assist-wheels-pair was recommended to me. The challenge is that too much support from the servo motor carries the risk of wasting muscles, but too little support would leave me stranded. This model measures the muscle strength my arms can apply, and it automatically adjusts itself and gives only as much support as needed, but enough to still be moving forward.
What the funds are used for:
As I'm in Australia on a student visa, I don't have permanent residency and with that comes a lesser health cover. I have been encouraged by friends and family to share my story- those who know me well know that I’m feeling very vulnerable about making this public and asking for support. While my health insurance does cover a fair share of the cost for doctor’s appointments, the power assist is uncovered. Despite my level of health care, doctors’ appointments still come with significant out of pocket expenses, so after covering the gaps, things like highly recommended physiotherapy to strengthen muscles and the power assist for my wheelchair are beyond affordability.
Any funds raised will be used to cover the 'Power Assist' for my wheelchair and then contribute towards out of pocket expenses for specialist appointments upcoming- including rheumatologist, neurologist, ophthalmologist and physiotherapy.
The reason I am doing this:
Despite the current state of my health and the progressive prognosis of EDS, the German government department has denied TWICE to recognise my disabilities as such. This is common practice unfortunately, and for me it means that I would not be able to access the support needed even if I moved back, so relocating back to Germany would not make any difference.
I am doing fund raising because I am in a situation I cannot get through on my own, being unable to access support in Australia and being refused support in my home country. The 'Power Assist' would allow me to get my mobility back that the illness has robbed me of. While I am trying to think positive, it has been incredibly difficult to process what is happening to my body. Asking for help doesn’t come easy, but after encouragement from friends and family I decided to take this step.
Thank you!
Thank you for your time to read my story. I can’t express how much your support means to me- whether a contribution or prayer- please know that it is making a huge difference and helping to move forward again- in many ways.
Thank you and God bless you.
Love,
Julia
I’m Julia and I just turned 26. Originally from Germany, I now live in beautiful Perth, in Australia and just started my second year of uni, studying Computer Science. I love every minute of it, and earlier this year I was offered a job at uni as an ambassador, which means I get to share my passion for computer science with high school students and teach them how to write their own programs. I also volunteer at Scitech, a science exhibition where kids can discover the world of science, and on Sundays I am part of kids ministry at church. I am so grateful for these opportunities and there is nothing I would rather do.
What’s going on:
I was recently diagnosed with classic/hypermobile Ehlers Danlos Syndrome (EDS) after countless joint dislocations, broken bones, three knee reconstructions and other complications. As a connective tissue disorder, EDS results in faulty connective tissue. Connective tissue is like glue that is meant to hold everything in the body together, but in the case of EDS it doesn’t. This results in weak ligaments and tendons, instable joints that dislocate frequently, fragile skin, bones and blood vessels- it is affecting most of my body and causes extreme levels of pain. The cruelty is that it is slowly making my body fall apart and there is nothing that can be done to stop it. I have had countless hospital admissions to manage complications such as a brain inflammation, infections, extreme levels of pain as well as several surgeries. I was also diagnosed with Narcolepsy, which is a sleep disorder that leaves the body unable to manage sleep-wake cycles, resulting in a 24/7 jet lag level of tiredness. EDS is lifelong. There is no cure, so medical support is palliative. Because my joints have become too instable and dislocations too frequent, I am using a wheelchair to get around. Losing my mobility was huge, but it has drastically reduced the number of dislocations and pain levels so that I was even able to start uni again last year.
Through all that has been going on, “Can’t” has never existed in my vocabulary… until I recently started having muscle weakness in my eyes, arms, legs and neck and simple things became impossible; no matter how hard I tried, my body wouldn’t work. An episode of breathing trouble recently landed me in hospital for three weeks, I am having double vision and it is now also affecting my ability to swallow. Due to the muscle weakness in my arms, my mobility is heavily impacted, and it has become quite a struggle to move my wheelchair, making it very difficult to go back to uni or work. I am so grateful for the things I get to do, however, with all these deteriorations I have had to put most of my life (including commitments) on pause.
What has been highly suggested to me to regain a level of mobility is a 'Power Assist', a servo motor that gets mounted onto the wheels and gives support when moving the wheelchair. After seeking specialist advise on it, this particular one https://www.pushmobility.com.au/collections/power-assist/products/twion-power-assist-wheels-pair was recommended to me. The challenge is that too much support from the servo motor carries the risk of wasting muscles, but too little support would leave me stranded. This model measures the muscle strength my arms can apply, and it automatically adjusts itself and gives only as much support as needed, but enough to still be moving forward.
What the funds are used for:
As I'm in Australia on a student visa, I don't have permanent residency and with that comes a lesser health cover. I have been encouraged by friends and family to share my story- those who know me well know that I’m feeling very vulnerable about making this public and asking for support. While my health insurance does cover a fair share of the cost for doctor’s appointments, the power assist is uncovered. Despite my level of health care, doctors’ appointments still come with significant out of pocket expenses, so after covering the gaps, things like highly recommended physiotherapy to strengthen muscles and the power assist for my wheelchair are beyond affordability.
Any funds raised will be used to cover the 'Power Assist' for my wheelchair and then contribute towards out of pocket expenses for specialist appointments upcoming- including rheumatologist, neurologist, ophthalmologist and physiotherapy.
The reason I am doing this:
Despite the current state of my health and the progressive prognosis of EDS, the German government department has denied TWICE to recognise my disabilities as such. This is common practice unfortunately, and for me it means that I would not be able to access the support needed even if I moved back, so relocating back to Germany would not make any difference.
I am doing fund raising because I am in a situation I cannot get through on my own, being unable to access support in Australia and being refused support in my home country. The 'Power Assist' would allow me to get my mobility back that the illness has robbed me of. While I am trying to think positive, it has been incredibly difficult to process what is happening to my body. Asking for help doesn’t come easy, but after encouragement from friends and family I decided to take this step.
Thank you!
Thank you for your time to read my story. I can’t express how much your support means to me- whether a contribution or prayer- please know that it is making a huge difference and helping to move forward again- in many ways.
Thank you and God bless you.
Love,
Julia
Organizer
Julia Sz
Organizer
Mullaloo, WA