About me:

My name is Beth and I'm 35 years old, living in Brooklyn unable to work and on medicaid. I was recently diagnosed with Ehlers Danlos Syndrome (EDS) after 4 long years of trying to understand my major health decline. It took over 30 doctors in over 6 different specialties between NYC and Florida. I even traveled to Thailand and Mexico for medical tourism all by myself and have personally invested several thousands into getting help. Most money I've ever spent on anything in life including my car I had to sell in order to pay bills.

My financial predicament:

Many EDS specialists do not accept any insurance, much less Medicaid. Always impossible out of pocket costs and painful wait times up to 6 months-2 years. The condition is degenerative and irreversible... it's hard for me to say out loud or type but I have to accept my life will never be the same. I started off desperately seeking a cure and here I am years later forever changed for the worse. There is no cure. There's only management which is really expensive. My symptoms have gotten so severe that I am way past management and in need of urgent rehabilitation and even further diagnosing to make sure I understand the full picture.

My needs:

Genetics testing is necessary to rule out Vascular EDS. This type is rare but has a life expectancy of 48. My Grandpa died of a brain aneurysm at 45. Like me he was experiencing debilitating pressure headaches for a while before the one that killed him. The doctor agreed it is best to rule out now.

In addition to this test I will have to pay OOP. I will need enough money to see other specialists as well. I will be setting a goal of $15,000 to start. This number is based on the medical census from 2022 calculating the average annual OOP cost for EDS being over $13k. Things that this money will cover are doc visits, transportation, labs, testing, relocation, housing, physical therapy, food and other necessities. It's honestly a low amount to begin with knowing what I'm up against but I'm still worried that it's unattainable. When I need more money in the future I will have to cross that bridge when I get to it.

A little more of my struggle:

There were times I strongly felt that death would be easier and better than continuing to fight for life in a world that doesn't care if I perish. I did attempt to "end things" more than once and struggle with ongoing anguish about my new circumstances. I used to be so active and adventurous... I'm actually so thankful I lived large while I could. None of this sickness is my fault or self inflicted. But it's on me to figure out how to survive. I would love to work again one day simply because I can't stand the thought of being a burden or begging to get by and I have no idea how else to survive. Disability is capped around $1300 monthly and revoked if you make your own money or get married. It's a poverty trap like most things. I have to embrace limitations now that would be hard to accept in old age but way more so at 35 when there was so so so much left I wanted to do. Please help me get some kind of life back.

No matter how good someone's insurance is, we are all running into brick walls with heartless insurance denials made by robots. There's out of network care costs and excruciating wait times. With Medicaid it's even worse. Doctors are paid much less per Medicaid patient and the paperwork is more arduous so many do not accept this insurance. When they do accept it... it's often patient mills stacking up as many individuals as possible and running as many basic labs as possible that are easy to approve so they can rack up $$$ and ghost you afterwards.

My problems started with my ears and my head but it has gradually consumed me top to bottom. Most of my time in doctor's offices was spent being totally dismissed. They all laughed out loud in my face as it was getting worse, saying I'm too young to feel this bad. I was told my blood work was normal and I looked great. Most thought I was just a nervous anxiety riddled woman of a certain age no matter how I presented myself. I'd practice what to say each time hoping if I could be precise enough and appeal to them enough someone would finally have a sense of urgency or curiosity as to what's really wrong. No revisions could save me. It for real feels like the butterfly effect in real life. My partner started coming with me to vouch and advocate but none of his participation has helped at all either. Lotta people like to suggest if they were there they'd make the doctor do what we need but I promise I've exhausted all methods. With my partner as my witness my PCP even said he was gonna prescribe me a smile. All of these things are unfortunately rampant and I am not unique in my suffering whatsoever.

There have been small clues here and there over the years... compressed nerves, early arthritis everywhere, cervical instability, musculoskeletal scoliosis, erosion at my skull base and in my ear bones. Slowly I collected these clues before recently being diagnosed with Ehlers Danlos Syndrome. Currently only sure that I have the hypermobile type but need to raise money for genetics testing that insurance will not cover. All types come with chronic pain and tons of comorbidity. It rules over the whole body since it is a connective tissue disease and connective tissue is everywhere in the body, even our brains. The barrage of symptoms and complications often drastically harm quality of life for anyone who suffers. One of the reasons it took so long to find is that it is so multidisciplinary and our care system is extremely fragmented with no communication between specialists working together to make sure all the pieces make sense. It also mostly affects women and is horribly underfunded/under researched.