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I am making this fundraiser to try to help my wonderful SiL with the expenses of treating a debilitating illness. Jess finally has a diagnosis but can not receive her much needed treatment without your help! Jess has been diagnosed with Ehlers Danlos Syndrome thanks to a specialist and genetic testing. This syndrome has caused instability with her vertebra and compression of her brainstem and cerebellum. As you can imagine, this causes extreme pain, ataxia and other neurological issues. Due to her current condition, even a simple short car ride can lead to days of serious migraines and neurological issues.
Less than 1% of persons with EDS develop compression of the brainstem and that has made finding treatment extremely difficult. However there is hope! There is a world renowned neurologist in Maryland at the Metropolitan Neurosurgery Group that has pioneered a technique to relieve the compression of the brainstem, open up the foramen magnum and increase the volume of the posterior cranial fossa. She is experienced with EDS and Jess's specific condition. For any nerds like me, the surgery that Jess needs is C2 fusion, open reduction, allograft, autograft and foramen magnum decompression. This will require Jess to stay in Maryland for at least two weeks.
Jess needs your support to make this surgery happen!! While insurance helps with some medical bills, it does not cover any of the costs for travel, hotel or expenses and even with their health insurance the bills will be upwards of $10,000 which just isn't possible without help and support. If you can donate even a small amount it will be greatly appreciated and will help Jess get one step closer to the medical care she desperately needs!
I asked Jess to describe her struggle and symptoms below -
Some of the things I have been experiencing are flashes of light in the corner of my eye, a weird tic where my body jolts backward has developed and I also get extreme nerve pain in my face that feels like I’m being electrocuted - it is excruciating. My neck is sore all the time. Occasionally I get numbness and tingling in my arms and legs. Extreme sensitivity to light and sound and Rarely, it impacts my ability to swallow. I have cognitive changes that are a result, as well. I wake up every few hours either from pain or from my body thinking I’m in crisis.
I have done a few rounds of physical therapy that haven’t made a difference. I am exhausted all the time from pain. Now I am down to only an hour or two out of bed each day. Even my softest pillow hurts my neck. It feels like daily whiplash mixed with migraine, jaw pain, an ear infection - on top of the electrical (nerve) pain.
One of the hardest things to deal with aside from pain has been that I cannot drive or ride in the car for more than ten minutes these days without flaring my pain, this has been the hardest to deal with as I missed out on spending time with people I love. I am very upset with myself for losing time with my late friend Jason and others to this illness and if I can do anything to prevent this from continuing, I am going to do my very best to try.
Thank you,
-- April VanBuren --
Less than 1% of persons with EDS develop compression of the brainstem and that has made finding treatment extremely difficult. However there is hope! There is a world renowned neurologist in Maryland at the Metropolitan Neurosurgery Group that has pioneered a technique to relieve the compression of the brainstem, open up the foramen magnum and increase the volume of the posterior cranial fossa. She is experienced with EDS and Jess's specific condition. For any nerds like me, the surgery that Jess needs is C2 fusion, open reduction, allograft, autograft and foramen magnum decompression. This will require Jess to stay in Maryland for at least two weeks.
Jess needs your support to make this surgery happen!! While insurance helps with some medical bills, it does not cover any of the costs for travel, hotel or expenses and even with their health insurance the bills will be upwards of $10,000 which just isn't possible without help and support. If you can donate even a small amount it will be greatly appreciated and will help Jess get one step closer to the medical care she desperately needs!
I asked Jess to describe her struggle and symptoms below -
Some of the things I have been experiencing are flashes of light in the corner of my eye, a weird tic where my body jolts backward has developed and I also get extreme nerve pain in my face that feels like I’m being electrocuted - it is excruciating. My neck is sore all the time. Occasionally I get numbness and tingling in my arms and legs. Extreme sensitivity to light and sound and Rarely, it impacts my ability to swallow. I have cognitive changes that are a result, as well. I wake up every few hours either from pain or from my body thinking I’m in crisis.
I have done a few rounds of physical therapy that haven’t made a difference. I am exhausted all the time from pain. Now I am down to only an hour or two out of bed each day. Even my softest pillow hurts my neck. It feels like daily whiplash mixed with migraine, jaw pain, an ear infection - on top of the electrical (nerve) pain.
One of the hardest things to deal with aside from pain has been that I cannot drive or ride in the car for more than ten minutes these days without flaring my pain, this has been the hardest to deal with as I missed out on spending time with people I love. I am very upset with myself for losing time with my late friend Jason and others to this illness and if I can do anything to prevent this from continuing, I am going to do my very best to try.
Thank you,
-- April VanBuren --