Help Lauren access treatment for Ehlers Danlos Syndrome
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Hello, I am Lauren Tosswill, an artist and experimental musician. Last year I was diagnosed with hEDS (Hypermobile Ehlers Danlos Syndrome), a genetic disorder affecting connective tissue throughout the body. Among other things, this disorder has caused damage to my spine, resulting in chronic pain and full-body neurological symptoms. My symptoms have not responded well to treatment so far. I am seeking funds to access specialized medical care for my spine and also to address co-morbid health problems related to hEDS.
Here is more about my situation:
A little over a year ago my health began to decline. Initially my symptoms were chronic abdominal pain and insomnia. Then I began to experience neurological symptoms including the sensation of pins and needles, burning, electrical shocks, and numbness throughout my body. The symptoms started in the fingers of my left hand and gradually spread to both arms, down my legs and into my feet, and across my head and face. I had supine and upright MRIs of my spine, an MRI of my brain, and dynamic x-rays of my neck. I was referred to the center for spine medicine at Weill Cornell where I was finally diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). hEDS is a genetic disorder which affects connective tissue, making ligaments and tendons fragile. My neurological symptoms are caused by damage to the connective tissues supporting the vertebrae in my neck, causing the vertebrae to collapse and compress my spinal cord.
I live with chronic pain and vertigo, the ground under my feet feels like it is pitching and swaying as if I am on a boat in the waves. Sometimes I cannot sense where my limbs are in space. When I lie down I lose sensation in my arms and legs and it feels like they are immersed in TV static. My vision sometimes blacks out with visual snow. My hands
and my left foot have tremors. I have weaker reflexes on the left side of my body. I have muscle twitches, jerks, and spasms throughout my body.
Due to my health I stopped working last summer and I moved back in with family while receiving medical treatment. So far my symptoms have not responded to physical therapy and some symptoms have worsened. Over the past year I received treatment from six different physical therapists for my spine. None of the providers I saw had enough specialized knowledge regarding hEDS to offer effective treatment, and some inadvertently caused further harm to my spine.
Through research I found Susan Chalela who is one of the few physical therapists in the country who specializes in cervical spine therapies for hEDS patients. Here are a couple papers she has co-authored on the subject in the last few years:
And here:
On January 9th of this year I met with Susan Chalela. She reviewed my case and believes I am a good candidate for treatment. This treatment has the potential to be life changing. Her physical therapy techniques have successfully rehabilitated many hEDS patients suffering from debilitating chronic pain and neurological dysfunction.
I am seeking funds to cover cervical spine treatment with Susan Chalela. I am also seeking funds to cover out-of-pocket expenses to address comorbid problems related to hEDS including GI dysfunction and dysautonomia.
Currently I am staying with family in a rural area where medical care is difficult to access. Funds raised beyond medical costs will be put towards moving into accessible housing that is geographically closer to medical treatment and public transportation.
This past year has been incredibly frightening and isolating. It's been especially hard to put my art practice on hold and lose touch with my creative community. My goal for this year is to heal and return to a place of stability so that I can once again engage in the activities and communities that bring meaning to my life.
Thank you for reading, donating, and sharing. I am very grateful.
Outline of expenses:
Cervical spine treatment $12,775
Therapeutic equipment for spine therapy $300
Modifications to bed and desk to protect spine $3,000
Out of pocket expenses for hEDS comorbidities $925
Accessible housing $6,000
Estimated GoFundMe fees $711
Total expenses $23,711
Fundraising team: Fundraiser Team (2)
Asha Tamirisa
Organizer
Portland, ME
Lauren Tosswill
Beneficiary
sascha braunig
Team member