Help Emily fight CRPS

This month is Disability awareness month, this week Emily’s birthday, and the 11 year anniversary of an accident that resulted in the onset of a rare autoimmune neuro inflammatory disease called CRPS or Chronic Regional Pain Syndrome nicknamed “suicides disease. “ CRPS is the most painful disease in existence, it ranks on the top of the McGill pain scale past childbirth and amputation and causes many side effects. Due to the accident Emily sustained a collapsed spine, disintegrated L2 vertebrae, shattered left foot and hips, a 9 months hospitalization, at the time complete paralysis waist down, many surgeries, CRPS neglect, and intensive physical rehabilitation to learn how to live in a wheelchair and immense medical and caregiver neglect, medical gaslighting, abuse and trauma. All while navigating americas austerity programs surviving an indescribably painful autoimmune disease and the many unbearable symptoms as a result of the disease and some near death experiences from having a compromised immune system, infections, heart conditions, and a pulmonary embolism. The main symptoms of CRPS are atrophy, discolored muscles, allodynia, gastroparesis, memory loss, fatigue, brain fog, headaches, nausea, compounded infections from lack of immune function and constantly being sick with various viruses from being around family and roommates. Not being given by SSI enough resources or care to live in an accessible home without roommates in any state which as an immunocompromised person has posed a great risk to their health during covid. Nor being able to have funds for the expensive out of pocket costs of an understudied underfunded rare disease. We are very worried about the loss of vision from neuroinflammation attacking the whole body including eye nerves causing progressive blindness going from a negative 3 to negative 7.5 prescription that continues to deteriorate.

For the past decade Emily has lived in immense pain struggling to survive, unable to work, and even month long episodes of severe pain that feels like their feet and legs are being burned and put through a meat grinder. In this pain Emily has had to function to a high degree due to lack of reliable care, housing crisis due to lack of wheelchair accessible housing, compounded illnesses, and due to their own experience dedicating their life to organizing and mobilizing for other disabled people's mobility, care, and housing needs, and publicly advocating for basic wheelchair access and healthcare needs. Emily went back to college in this incredible pain, had to drop out of school because of it, has installed many solo art shows while sick as well as given talks at major art institutions. Masking the unbearable nature of this disease and living in this pain greatly affects her quality of life and ability to function, especially in a wheelchair.

Emily has tried all of the treatments covered and not covered by insurance they could find afford and all with minimal benefit. Since finding out about the full body neuromuscular treatment at the Spero Clinic via other friends with CRPS this disease can go into remission, Emily can even regain mobility and hopefully the use of her legs so please consider donating as her birthday is tomorrow and treatment with housing can reach 50,000. We chose the Burning Limb Foundation to fundraise as they dedicate their life to helping others with CRPS, because they don't take a percentage like gofundme nor due proceeds have to be taxed. So all proceeds go directly to the treatment center that has enabled the founder of the organization and so many other CRPS warriors to regain their lives as well. Let's get Emily in remission so that they can live with the bare minimum we all take for granted. Please share this widely with your network especially if you’ve been moved by their art and advocacy.

Hi everyone! Thank you so much for being here- the pain is really bad today it feels like my legs and feet are being repeatedly crushed and I have a bad migraine it would mean the world to me to have my life back, independence, basic health and be able to help other friends with this disease.

Testimonies of Emily's friends

Emily has been my dearest friend for over 13 years. I will never forget being with Emily in the hospital after the accident. Following the weeks of surgeries Emily was just skin and bones with a face drained pale with pain. My heart broke for my sweet friend. However drastic the outer changes were, Emily was the same witty, vivacious, thoughtful person that I have always known. It has been 11 years and Emily has lived with this consistent pain ever since––the only future I can accept is one where there can finally be a stop to it. -Angela

I remember when you were having a terrible flare and couldn’t even sit still or lie down without crying out in pain, and I laid down with you and looked up/practiced acupressure points to help with the pain. - Jennie

One time when Emily had a really bad CRPS flare & foot pain, I came by with a bag of groceries since they were low, some camomile flowers, my Hitachi magic wand, and massaged their feet adding some cbd cream while they read me a whole research paper about the vagus nerve / chronic pain and made me an incredible matcha latte with homemade almond milk (which they later sent me home with a full mason jar). Emily is one of the most generous souls I know, every time you go by their place they have a lil something that they thought of just for you. - Clarisse