CRYSTALS SURGERY FUND
Organized by: Crystal Wilson
Thank you so much for taking time to read my story. I am a loving & devoted single mom to an energetic, amazing little man who is 5 yrs old. For several years I have suffered with "mystery" pain all over my body (pain so extreme that being bumped or poked has brought me to tears) decreased mobility, extreme fatigue & exhaustion, migraines, severe brain fog, minor short term memory issues, insomnia, swelling and numbness in my legs & arms. My quality of life in general has suffered enormously from what it was just 3-4 yrs ago. I honestly cant even put into words how much of my life it has affected.
In the last 3 years I have struggled to fight through the pain, struggled to keep up with my little one. I have struggled to do very simple daily tasks. This situation has been debilitating. I saw several doctors over the years and the cause of my symptoms could never be figured out with certainty.
In this last year I started to notice a terrifying increase in symptoms & in pain especially, and because of this, I have pushed for further testing & for new referrals... and finally received some concrete answers regarding my symptoms & condition. I was diagnosed with Dercum's Disease and the associated secondary condition of Lipedema. Two rare conditions, one of which, is not well-known in Canada. There is very, very little information, there are very few specialists, very few studies have been performed and very little support & treatment from the medical community is available in Canada.
Germany and the UK are leading the path for information, research, education, specialists & treatments and right now, that is where I wish I was. There are actually clinics there with specialists and surgeons that solely treat these diseases. But that doesn't help me here in Canada. The surgeries that I need, that will hopefully stop the progression of the diseases and debilitating symptoms, surgery will decrease the pain & swelling and hopefully prevent immobility and further damage to my lymphatic & nervous system are not covered by OHIP here in Canada. Here in Canada there is not enough research to support the funding of treatments for these 2 rare diseases.
The benign lipomas (tumours) are located just under my skin in between fatty tissue and muscle and they have been causing havoc in my body, havoc to my immune system, havoc to my hormones, and many of them are on nerves which are causing extreme levels of pain. Because of the large number of tumours; going in and removing each one is impossible. The suggested & practiced treatment in the UK and Germany is Water Jet Assisted, Lymphatic Sparing Liposuction. A treatment that is not available in Canada. And definitely not covered by OHIP.
So I humbly ask for your help. If you know me personally, you know that this is the toughest part for me. I am a strong, independent & very private person. In fact not many people aside from those closest to me even know about my daily struggles. I never had the answers, or knew why this was happening so I never talked about it for the most part. Only a handful of people have seen the pain, have seen my recent issues with movement & mobility, have seen the depression & frustration that it has caused knowing that something is happening to my body and I have no control over it.
These surgeries are NOT just an option for me. These surgeries are the only chance that I have to gain back some mobility, to enjoy my sons childhood and essentially the hope is that this will give me back my life. Just keeping up with my 5 year old, not living with daily pain, I just want to be myself again. Unfortunately, I cannot come up with the enormous amount of money that these surgeries will cost to have done. Not without the help & donations of others. The prognosis ...if I don't have the surgeries is increased mobility issues, increased pain, complications with my lymphatic and nervous system as well as many others.
The closest surgeon who is willing to complete these surgeries is in New Jersey. The distance is not really a problem for me, but unfortunately the $11,000 USD price tag for each surgery is.
I need your help. This is impossible for me to do without you and your help. And this IS the most important & toughest thing that I have ever faced. I just want my life back. I dont want to miss out on more of my sons childhood. Because I know it only happens once. I can't get back this time with him. I also don't want him to have to watch me suffer anymore. I don't want to just exist anymore... I want to actually LIVE my life again.
Please help me reach my goal and get my surgeries. If you are unable to donate at this time, please share my story.
Thank you so much everyone for your love & support!