Deanna Brownlee

You Can Help Make a Difference

My name is Deanna Brownlee. I’m 35 years old, and I have hypermobile Ehlers Danlos Syndrome (hEDS). What does that mean, exactly?

It means I have a “mistake” in my genes that causes my body to make defective connective tissue. Connective tissue lives all throughout the body, so hEDS causes problems in lots of places. Just a few of these problems:
– POTS: postural orthostatic tachycardia syndrome means that you get sick, dizzy, fatigued, and dehydrated upon standing up. you overheat easily, your blood pools, and you get nauseous.
– Gastroparesis: your body doesn’t understand how to digest food, so you end up with pain, nausea, vomiting, bloating, IBS, and total loss of appetite.
– MCAD: mast cell activation disorder is when you have extreme allergic reactions to harmless, everyday exposures like scents, body washes, and medications.
– Lipedema: this is an often-painful condition that mimics obesity. Your arms and legs remain permanently and painfully swollen and inflamed, and your body becomes misshapen.
– CVID: common variable immunodeficiency disease simply means that you get frequent severe infections, most commonly of the ears and respiratory system.

These comorbidities are just a few of the diseases that hEDS causes. The disease also causes frequent dislocations, brain fog, heart valve issues, extreme fatigue, unrestful sleep, pain, insomnia, and a host of other problems. While it is not guaranteed to be fatal, this disease certainly can be. And there is no cure. All I can do is try to diminish the symptoms as I encounter them, try to control the pain, and advocate for myself and others.

It took me 13 years to get a diagnosis, and unfortunately, that’s typical for most hEDS patients. Doctors don’t understand the disease, no one believes you’re even sick, and everyone dismisses you, accusing you of making poor lifestyle choices. This futility continued for the entire duration of my diagnosis journey, and it was the most emotionally devastating experience I have ever had. My life was in shambles. I had no health insurance, no way of seeing a doctor, no way of supporting myself financially, and no way to fight for disability.
For 13 years, I tried and failed. I bounced from home to home in a desperate bid to avoid homelessness. I contacted every hospital, clinic, charity organization, government entity, and social program in the state. I lost all control of my own life, and all I could do was watch it happen.

I slipped through the cracks, over and over again, for the entire 13 years. I was too sick to work (but God knows I tried). So I tried applying for disability instead. But that didn’t work, because you don’t qualify without a diagnosis. But I couldn’t get a diagnosis because I had no health insurance. But I couldn’t get health insurance, because I’m too sick to work. When the Affordable Care Act became a law, I thought it would save me. But without an income, I couldn’t afford even the lowest-tier plan. My state also chose not to expand Medicaid, so I slipped through the cracks yet again.

In the middle of all of that, I eventually found stable housing, and that is where I currently live. My 3 roommates understand that I can’t help pay for anything, but it’s incredibly difficult for all of us. We are financially strapped, we have one barely-working vehicle between the four of us, and only two of us are working. 2 of my roommates work full-time, I have medical problems, and we literally cannot afford to get my fourth roommate to and from work. We can’t afford a second car, we can’t coordinate our schedules, and we cannot afford the equipment that would allow her to work from home. We can barely afford to eat once a day, and every small setback is financially devastating. We always seem to be one crisis away from losing our home, and it’s exasperating. Two people are working themselves to the bone to keep an entire household afloat, and the burden is insurmountable. And we are still living below poverty level.

While all of that continues to unfold, a GoFundMe donation enabled me to see a very talented geneticist in my state. Friends donated their time, gas, and transportation, and on that day, I got my diagnosis. August 29, 2017 was the first day of the rest of my life.

That was a monumental, life-changing day for me. I felt so empowered! But the work still is not done. I still have to find doctors who can diagnose and treat all my comorbidities. Doing so would provide more evidence of my illness, thus strengthening my disability case.

But I still have no health insurance and no income. After fighting for 3 years, a local program called CarePartners accepted me into their indigent care program. But it isn’t free, and it only covers blood tests and visits. If I have to have anything done at the hospital, I won’t be able to afford it. The hospital does have financial assistance, but you have to reapply for each hospital visit, and the process takes months of frustration and headaches. And it doesn’t cover the doctor’s bill. And because of my desperate lack of transportation, getting to and from these doctor appointments is another layer to all of this. Friends have been generous, but sometimes they need gas money. So every element of my life requires extensive, intense planning purely due to my lack of resources. While I have come so far, I still have so far to go.

In the meantime, I have also restarted my fight for disability – a third time. With a diagnosis in my arsenal, a lawyer has finally agreed to take my case. After two denials and two appeals, my lawyer has finally requested a court date. Soon, my case will go to trial.

I hope my lawyer helps me win my case. But a strong case needs a diagnosis plus comorbidities, and I still don’t have any of my comorbidities diagnosed. And I’ve never been able to work, so I don’t qualify for SSDI, which would be close to a liveable income. I only qualify for SSI. While I am more than grateful for anything I receive, I will still need help. Medicaid also won’t cover everything I need. So, no matter the outcome, I still need Help Hope Live and my donors to give me a leg up.

Donations to Help Hope Live in my honor, will help ease the financial burden of hEDS and allow me focus on finding doctors and treatment that will help me to hopefully some type of recovery or as close as I can get.

I chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please consider sharing this link with others so they may donate as well.

For Checks:

Make checks payable to: Help Hope Live
Note in memo section: In honor of Deanna Brownlee

Please send to: Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Suite 100, Radnor, PA 19087

I hope you all have enjoyed reading, and that you empathize with my story. My journey is far from over, and I invite you all to walk it with me. I look forward to providing updates as my life continues to teach me perseverance.

Thank you all for reading and any support you can contribute.

For more information, please contact Help Hope Live at 800.642.8399.