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Shelley's Lipedema Surgery

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Before reading my story please know that sharing this information publicly is a difficult thing to do. It has been a struggle to open up and talk about my medical condition, it is even more difficult to ask for help. I am doing so because I believe it is important to share and spread awareness of a lesser known medical condition. I am also doing so because I have the fortune of being surrounded by wonderful people that have expressed their desire to support me. So here I am, being brave and telling you my story!

Most of my life I knew something wasn’t right with my legs. They had a significant amount of constant pain, were extremely painful to be touched, constantly had massive bruises on them for no apparent reason and were abnormally large. I brought it up to Doctors several times in my life  and even though I have a wonderfully supportive Family Doctor - I was told that it was just a case of bad genetics.  (My Dr. is now familiar with Lipedema and is 100% behind me!) This disease  is hormonal and progresses at puberty, pregnancy and menopause– so after I had my son 6 years ago, things got significantly worse. I knew something was really wrong when my son was a toddler and would crawl on my legs and I would scream in pain – but still I could get no answers as to what was causing the pain.

That changed 3 years ago when I found out about Lipedema.  The day I found out about this disease I cried with relief because finally there was an answer to what was wrong with me.  Lipedema is a medical condition that is identified by an unusual, symmetric accumulation of lipedemic cells in the lower body.  Lipedema is characterized by increased adipose tissue in the limbs, and the adipose tissue may be painful. There is a very wide manifestation of disease symptoms. The pain may be constant, may come and go, or only occur when pressure is applied to the adipose tissue. As the disease progresses, pain, tenderness, and swelling increase while mobility decreases. Unfortunately, I also found out that as the disease progresses, it will affect my mobility. If untreated there is a high probability that in the future I will require some sort of mobility assistance. I am desperately trying to avoid that!

Those of you that know me personally know that I am an ambitious, active, busy person, and mother of a young boy, so I started researching treatment options.  I have been diagnosed with the disease by three different doctors in Ontario, as well as surgeons in both the U.S. and Germany. There is a surgery that can reverse the effects of Lipedema, but unfortunately at this point is not available in Canada. The good news is that the surgery is available in the U.S and in Europe. Lipedema has been treated in Germany since the 1940’s and the treatment was pioneered there. After researching all of my options, it’s clear that the best skilled surgeons are in Germany and the surgery costs in Germany are also significantly lower than in the U.S. Therefore my plan is to be treated in Germany but OHIP has denied my application for out-of-country funding.

I will require three separate surgeries and have been scheduled for these in Cologne, Germany in July 2019, October 2019 and January 2020. The cost of my surgeries including all medical expenses and travel will be approximately $40,000. To help fund these costly medical procedures we recently sold our home and purchased a new one which allowed us to access some of the equity we attained over the years and use it towards funding the surgery. Nevertheless we are still short of the total expenses.

Personally I am doing everything I can to give myself the best shot at a healthy and active future with & for my family! Over the past months I have lost over 115lbs (and counting) so I can be in the best possible condition for the surgeries. 

It's important for me to say that  I am aware that there are people out there in much worse situations than I am. Lipedema is not a life threatening disease, but left untreated it will definitely impact my long-term health & mobility and my family’s quality of life. Proceeding with the medical treatment is an opportunity that I have to take, I am hoping you will support me in doing so.

Thank you – for reading my story and for supporting me in every way you can!

Here are some links to more information regarding Lipedema

http://lipedemanetworkcanada.com/

https://www.lipedema.org/about-lipedema
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Spenden 

  • Donalda Kelly
    • $100 
    • 4 yrs
Spenden

Organisator

Shelley VanVeen
Organisator
Ingersoll, ON

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