Give Kimberly Hope: Funds for life-changing treatment

Imagine facing each day with constant pain and uncertainty. A simple walk down the street or getting up from the couch could result in a torn ligament or dislocated joint. Trying a new medication or food might trigger anaphylaxis. Leaving the house means bringing emergency medicines for unexpected bleeding, allergic reactions, and electrolyte imbalances. I have Ehlers-Danlos Syndrome and this is my reality. Your contribution can help me regain control over my life. (please see posted updates for more recent details on my journey!)

I’m asking for your help to cover substantial out-of-pocket expenses related to my health. I have been employed with the same company for over seven years and I have health insurance coverage. Despite this, my life revolves around figuring out how to pay for upcoming medical care and keeping debt collectors at bay.

I’m Kimberly. I’m 35, and I’ve spent the last few years tirelessly tracking down the answers to why I’ve been sick for as long as I can remember. Somehow, despite going to more doctor appointments than anyone else I’ve ever met, none of those doctors ever noticed that I’m autistic, or that I suffer from a severe form of a genetic connective tissue disorder called Hypermobile Ehlers-Danlos Syndrome (hEDS).

My medical journey has been immensely challenging. EDS is considered to be rare (though new research shows it's much less rare than previously thought!), and it's often overlooked, leading to a diagnostic odyssey that can take years. According to The Ehlers-Danlos Society, the average time to diagnosis from the onset of symptoms is 10-12 years. In my case, it took a staggering 26 years from the onset of symptoms at age 7 to be properly diagnosed at 34.

When I was 11, my hEDS symptoms were chalked up to “growing pains”, depression, and obesity. As I got older, I was misdiagnosed with bipolar disorder, fibromyalgia, Mixed Connective Tissue Disease, Sjogren’s Syndrome, and many more conditions that I don’t have. I was treated for these conditions with medications like anti-psychotics and anti-convulsants, many of which caused side effects that I never should have had to experience. Now, I'm seeking your help to finally access appropriate treatments and therapies that could significantly improve my quality of life and help me manage my multiple chronic conditions effectively.

hEDS causes my collagen to be defective, impacting skin, bones, cartilage, ligaments, muscles, teeth, blood, and other connective tissues. Collagen makes up three-quarters of our skin and one-third of the protein in our bodies. This has led to several additional rare illnesses in my case, including Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope, Chronic Fatigue Syndrome (CFS), Acquired Von Willebrand’s Disease (aVWD), and cervical instability. As if that wasn’t enough for one person to deal with, it’s also very easy for those of us with Ehlers-Danlos Syndrome to be injured, and my Von Willebrand’s Disease makes me bleed out quickly due to my inability to clot fast enough.

Hospitalizations, injuries, physical therapy, specialist visits, lab work, imaging, biopsies, and surgical procedures have become routine. All of this is coupled with joint and muscle pain, fatigue, allergic reactions, joint subluxations (partial dislocations), and gastrointestinal discomfort that I experience each day.

Imagine struggling to find knowledgeable doctors for your rare condition, and that those you do find are often hundreds or thousands of miles away and not in-network with your insurance. Then, imagine that the treatments and tests they recommend aren’t covered by insurance either. Plus, the orthopedic doctor you found can only treat your hands and wrists, so you’ll need additional doctors for your shoulders, hips, knees, ankles, elbows, and spine. Welcome to life with Ehlers-Danlos Syndrome!

The Plan:

I'm launching this GoFundMe campaign to cover sizeable out-of-pocket expenses. Despite being employed and having insurance coverage, many necessary treatments are not covered, and EDS specialists are often out of network. This makes it very difficult for me to access the care I desperately require.

For example, I need to be in physical therapy at least once weekly for an extended period of time. My insurance only covers 20 physical therapy visits per calendar year. Plus, the only physical therapist in my area who is knowledgeable about EDS is not in-network. After 34 years of ignorance about the way my body works, and improper treatment from past physical therapists who overlooked and didn’t understand my disease, I have a long road ahead of me, and I need very specialized guidance.

My current outstanding unpaid medical bills and my credit card and personal loan debt for medical expenses from the last two years amount to nearly $40,000. These debts and their high interest rates are exacerbating the challenges I face in accessing necessary care.

A conservative projection for my out-of-pocket expenses for 2024 alone, after insurance, is $47,500. This is more than 75% of my current gross salary! Uncovered treatments and expenses include travel for EDS and POTS treatments, consultations with out-of-network specialists, specialized diagnostic imaging, genetic testing, various therapies, injections, medications, supplements, physical therapy, and custom-made braces and orthotics.

Additional non-covered expenses include lifestyle adjustments such as a special diet, supplements, intravenous treatments, sensory and organizational aids for autism, and home modifications for better mobility and pain management.

Scroll down for a more detailed list of planned treatments and expenses for 2024.

Financial Goal and Why I Need Your Help:

My goal is to raise at least $100,000 to alleviate financial strain and access crucial treatments. This would eliminate my current medical debt and fund projected treatments for 2024. Every donation, no matter how small, contributes to my journey towards a healthier life.

Please Share:

It would mean so much to me if you would share this campaign with your friends, family, and social networks. Your support and outreach can make a world of difference for me.

Thank you for being a vital part of my support network. It is my dearest hope that I can repay your kindness through efforts to advocate for future generations of rare disease patients in the hopes that they might have an easier road to diagnosis.

Updates:

I will keep you updated on my progress and the utilization of funds through regular posts on this page.

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Non-covered treatments and related expenses include:

- Travel to and treatment at a clinic specializing in EDS

- Video consultation with a neurosurgeon specializing in cervical spine instability

- Travel to and treatment/testing at a facility that specializes in treating disorders affecting the autonomic nervous system

- Travel to and treatment with a doctor who specializes in PRP spinal injections

- Consultation with a doctor specializing in atlas orthogonal chiropractic treatment and CCI radiology review

- Physical therapy with a specialist in Ehlers-Danlos Syndrome

- REST float therapy

- Massage therapy

- Weight-loss medication to manage rare MC4R mutation-related obesity

- Nutritional supplements and electrolytes

- IV electrolyte therapies

- Mast Cell Activation Syndrome (MCAS) treatments

- Dental work

- Concierge access to primary care doctor willing to manage a complex, rare disease patient

Non-covered diagnostics include:

- Specialized spinal imaging

- Genetic testing

- Misc. labwork (I can’t estimate this cost because I never know what my doctors will order, and I never know if it’s covered until I get a bill later!)

Additional non-covered expenses include:

- Custom splints for wrists for significant bilateral midcarpal instability

- Custom orthotics and shoes for hindfoot deformity, ankle laxity and balance issues

- Compression garments

- Kinesiology Tape

- TENS unit replacement pads

- Insurance premiums

- Smartwatch to monitor vitals

- New pulse oximeter and blood pressure cuff

- Home modifications for mobility and pain management

- Insurance deductible and out-of-pocket maximum

- Train passes for travel to various appointments with geneticist, neurologist and electrophysiologist

Lifestyle Adjustments:

Managing my Mast Cell Activation Syndrome (MCAS) requires adhering to a gluten-free, low soy, low histamine diet, focusing on organic, non-GMO, antibiotic-free, and free-range foods. These dietary choices come with a higher cost, adding to my financial burden. Moreover, as an autistic adult with ADHD, I face sensory challenges and require specific items for personal use, such as noise-canceling headphones, earplugs, adjustable lighting solutions, smart home capabilities, and organizational aids, to better function in my daily life.