Help with Kelly's Surgeries and Medical Costs
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Hello everyone,
My name is Kelly Robertson. I am 25 years old and live in Manitoba. During my last year of university, I experienced many negative health issues which I would later find out to be symptoms of my condition. I had intense swelling in my lower limbs and my legs felt extremely tight and heavy. I was in constant pain and the swelling got so bad that it was difficult to even wear shoes.
After a long difficult journey, a vascular specialist diagnosed me with lipedema and secondary lymphedema. Lipedema is congenital and cannot be lessened by diet or exercise (this disease affects people of all sizes). Lipedema is an abnormal distribution of fatty tissue that continues to grow. For more information, here is a link to a video that discusses the condition: https://www.youtube.com/watch?v=_80XD_sXF-4 . Alternatively, you can go to Youtube and type in “Dr. Stutz Lipedema 101 Not all Fat is Created Equal.” It shows you photos and discusses what people face with the inevitable progression of the disease; not only do they have tight, heavy, swollen limbs and endure intense constant pain, many also end up with knee replacements or in wheelchairs, unable to walk. The secondary lymphedema (swelling) occurs due to the fatty tissue (lipedema) pushing on the lymph nodes.
This condition is quite detrimental and due to it, I have a very poor quality of life. I am very limited in the activities I can do; something as simple as going shopping or a short day trip needs a lot of planning and causes a lot of pain. Walking or standing for even an hour causes increased pain. Heat also worsens my condition, so it limits my outdoor activities. I also need to avoid any infections, as even a mosquito bite can cause severe cellulitis (due to an impaired immune system). I must wear expensive custom “heavy-duty” compression garments every day for the rest of my life. These garments also cause their own issues, such as skin rashes, compressed nerves, etc. I also need to go for lymphatic manual drainage massage on a frequent basis. Not only is this expensive but it is also extremely painful. During this treatment, they attempt to break up the fibrotic tissue that has settled and then move the lymph fluid through the nodes to try to reduce swelling. When I am unable to have these treatments done regularly, my condition immediately worsens. Although this treatment helps to somewhat maintain the lymphedema, this is not a cure nor treatment for the lipedema, which will continue to grow and worsen over time.
After much research and consulting with my vascular specialist, I came across a surgery that is offered in Germany. The surgery is called water-assisted liposuction and it is done by Dr. Josef Stutz, who pioneered this surgery and has been doing it successfully for many years with great results; this is unlike regular liposuction which could actually cause further harm. It is recommended to do this surgery as early in your diagnosis as possible; the sooner it can be treated, the better the results. My treatment involves three surgeries (2 on the legs and 1 on the arms, as my arms are also affected) over a 7-8 week stay, not including any possible time needed for quarantine. Due to Covid, we had to reschedule my 2021 surgery dates. My new surgery dates are scheduled for March/April of 2022. I've spoken to several people who have had these surgeries done by Dr. Stutz and each of them said it was worth it and that it gave them a much better quality of life. They mentioned that their pain was gone, their legs were no longer tight and heavy, and although not a guarantee, many of his patients are eventually able to stop wearing compression garments.
We are estimating a cost of around $60,000. This includes the three surgeries, flights (for both myself and a caregiver), accommodation, food, various supplies, covid-related costs, compression garments, and increased manual lymphatic drainage treatments for before and after surgery. Manitoba Health will not cover any portion of these costs. We are seeking financial support as these costs are out of our reach. Due to the pain caused by my condition, I am limited in how much I am able to work (currently working part-time). My mom is a single parent and since my mom and brother both have health issues (cancer, double herniated discs, etc) and are currently unable to work, it has been a struggle to cover day to day costs as well as all of our exorbitant medical expenses.
I am quite a private person and have suffered silently for several years, which is why I never thought I would be sharing this publicly. However, I do not want to miss out on this life-changing opportunity and find myself in a position where I need to ask for assistance.
Thank you for taking the time to read this. Your support would be greatly appreciated!
Kelly Robertson
My name is Kelly Robertson. I am 25 years old and live in Manitoba. During my last year of university, I experienced many negative health issues which I would later find out to be symptoms of my condition. I had intense swelling in my lower limbs and my legs felt extremely tight and heavy. I was in constant pain and the swelling got so bad that it was difficult to even wear shoes.
After a long difficult journey, a vascular specialist diagnosed me with lipedema and secondary lymphedema. Lipedema is congenital and cannot be lessened by diet or exercise (this disease affects people of all sizes). Lipedema is an abnormal distribution of fatty tissue that continues to grow. For more information, here is a link to a video that discusses the condition: https://www.youtube.com/watch?v=_80XD_sXF-4 . Alternatively, you can go to Youtube and type in “Dr. Stutz Lipedema 101 Not all Fat is Created Equal.” It shows you photos and discusses what people face with the inevitable progression of the disease; not only do they have tight, heavy, swollen limbs and endure intense constant pain, many also end up with knee replacements or in wheelchairs, unable to walk. The secondary lymphedema (swelling) occurs due to the fatty tissue (lipedema) pushing on the lymph nodes.
This condition is quite detrimental and due to it, I have a very poor quality of life. I am very limited in the activities I can do; something as simple as going shopping or a short day trip needs a lot of planning and causes a lot of pain. Walking or standing for even an hour causes increased pain. Heat also worsens my condition, so it limits my outdoor activities. I also need to avoid any infections, as even a mosquito bite can cause severe cellulitis (due to an impaired immune system). I must wear expensive custom “heavy-duty” compression garments every day for the rest of my life. These garments also cause their own issues, such as skin rashes, compressed nerves, etc. I also need to go for lymphatic manual drainage massage on a frequent basis. Not only is this expensive but it is also extremely painful. During this treatment, they attempt to break up the fibrotic tissue that has settled and then move the lymph fluid through the nodes to try to reduce swelling. When I am unable to have these treatments done regularly, my condition immediately worsens. Although this treatment helps to somewhat maintain the lymphedema, this is not a cure nor treatment for the lipedema, which will continue to grow and worsen over time.
After much research and consulting with my vascular specialist, I came across a surgery that is offered in Germany. The surgery is called water-assisted liposuction and it is done by Dr. Josef Stutz, who pioneered this surgery and has been doing it successfully for many years with great results; this is unlike regular liposuction which could actually cause further harm. It is recommended to do this surgery as early in your diagnosis as possible; the sooner it can be treated, the better the results. My treatment involves three surgeries (2 on the legs and 1 on the arms, as my arms are also affected) over a 7-8 week stay, not including any possible time needed for quarantine. Due to Covid, we had to reschedule my 2021 surgery dates. My new surgery dates are scheduled for March/April of 2022. I've spoken to several people who have had these surgeries done by Dr. Stutz and each of them said it was worth it and that it gave them a much better quality of life. They mentioned that their pain was gone, their legs were no longer tight and heavy, and although not a guarantee, many of his patients are eventually able to stop wearing compression garments.
We are estimating a cost of around $60,000. This includes the three surgeries, flights (for both myself and a caregiver), accommodation, food, various supplies, covid-related costs, compression garments, and increased manual lymphatic drainage treatments for before and after surgery. Manitoba Health will not cover any portion of these costs. We are seeking financial support as these costs are out of our reach. Due to the pain caused by my condition, I am limited in how much I am able to work (currently working part-time). My mom is a single parent and since my mom and brother both have health issues (cancer, double herniated discs, etc) and are currently unable to work, it has been a struggle to cover day to day costs as well as all of our exorbitant medical expenses.
I am quite a private person and have suffered silently for several years, which is why I never thought I would be sharing this publicly. However, I do not want to miss out on this life-changing opportunity and find myself in a position where I need to ask for assistance.
Thank you for taking the time to read this. Your support would be greatly appreciated!
Kelly Robertson
Organizer
Kelly Robertson
Organizer
Winkler, MB