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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.
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.
February 20, 2020
After weeks of patiently waiting, I finally saw my doctor, who was supposed to fill out my lawyer’s paperwork, then I could just focus exclusively on my trial from there. But, as he stated, “we can’t do that here.” I have different game plan in the works, though. My doctor gave me the name of another local doctor who CAN fill out the type of paperwork I have. So I’m going to verify that this other doctor will do it, and if not, call my lawyer and as them how to proceed. From there, I’ll try my best to plan transportation, coordinate payment, and then deal with medical records if he wants them. My hearing is 21 days away, so I have GOT to get this done! It’s crunch time! Wish me luck!
January 24, 2020
It’s update time!
My SSI hearing is looming closer and closer. The official date is March 12, 2020. A few days ago, I had one last phone meeting with my lawyer. She said she’d be sending me one last bit of paperwork that she wanted my doctor to fill out. She also wanted me to make a very specific, very descriptive, detailed list of how my symptoms affect my ability to function. I have written many things throughout my life; this one will surely be the most important.
Another development to note: I have had to find a THIRD immunologist. The first refused to see me, and the second has stopped making an effort to diagnose me. As they have stated, “There is no further treatment necessary at this time.” But all they did was order a single round of tests at my urging . . . and they’re already giving up. So I managed to get an appointment on the same day and with with the same new doctor as a friend of mine. The doctor is almost 2 hours away, and it looks like I’ll be carpooling with her. Funds raised from HelpHopeLive will pay for it. So plans for that are about 90% finalized. Unfortunately, the soonest I could get in to see this new doctor is April. So I won’t get her documentation before my hearing. But maybe the eeffort I’m making will count for something.
I’m afraid that I will have to keep this update brief, as typing has become more and more difficult with my progressively weakening hands. The aching and weakness is causing me to skip letters and end up with pain that starts in my fingers and travels to my wrists and then my forearms. I will be getting those ring splints as soon as I possibly can.
Thank you all for listening!
December 13, 2019
It’s been awhile since I last updated. But believe me when I say I’ve been busy! The two main issues I’ve been tackling have been my hormonal issues and my immune deficiency issues. And it’s been an uphill battle from the beginning. I thought I was making some headway, but this week has definitely proven otherwise.
After transportation plans threatened to derail my follow-up endocrinology appointment, I found transportation at the last minute. A week before this particular appointment, I had to fight to find a way to the blood draw lab for repeat tests. I still can’t figure out how I managed it, but I did. And my repeat testosterone and chem-8 blood tests were COMPLETELY unremarkable. My testosterone levels are exactly where they should be, and my chem-8 blood work showed absolutely no nutritional issues whatsoever. Nothing was even borderline high. Everything was totally normal and negative for all problems. Which is good to a point. But I still don’t have answers as to what’s happening with my hormones. To quote my endocrinologist, she said, “I don’t know what to make of that.” She recommended I see a dermatologist, which Care Partners does not offer. So it would be yet another fight to find the right doctor, fight to pay for the visit, fight to get to a blood draw lab, fight to pay for the testing, and fight to blindly search for more answers. I hope none of this sounds ungrateful, honestly. I think what keeps me going during my most overwhelming days are the donations. Because those donations enable me to keep searching for answers so that I can get what I need medically. If I can’t keep searching, I sometimes don’t feel like I have a lot left. I’m not sure exactly where I’m going to go from here in search of answers, but I won’t give up on it, either.
I also can’t forget about my immunology issues, either. It’s getting to the point where treatment (antibiotics, etc.) just don’t work at all, or the infection comes right back as soon as the treatment is over. So after I fought to find an immunologist, then fought to get to the appointment, then fought to get the blood work done . . . I had my follow-up appointment. It initially had to be rescheduled, because my blood work results took awhile to finalize. But I finally had that potentially life-changing appointment . . . and every single test was normal. I ordered over $900 worth of tests, and thankfully, the lab has financial assistance. And it’s good that I’m amassing a paper trail of medical evidence (thanks to donations), and it’s good that I don’t have CVID. But I also still don’t have answers, when there is clearly a problem. I’ll be honest with you all: I’m not thrilled. It’s hard to not be overwhelmed sometimes. It’s very disheartening when you work so hard, only to reach more dead ends. But I have to try to remember that every failure is one step closer to victory. And these donations are the only reason I’m able to continue moving forward.
As soon as I got home from my immunology appointment, I contacted the Immune Deficiency Foundation to see what I could do next. I spoke with someone there, and she said that I might have something called Specific Antibody Deficiency, which is very similar to CVID. I’m still learning about all of this, so I hope I have my facts straight. But I think CVID is where parts of your immune system are missing, while SAD is where all the parts are there, but they’re asleep on the job. This requires testing over the course of several months. It is called a Vaccine Challenge, and you get certain vaccines, then test your immunological response to them over time. I’ve got a follow-up appointment with my immunologist in 6 months, but they told me to call them if I have any questions before then. So I called them and told the nurse to call me back so I can discuss SAD testing. I am still waiting on that phone call. When I got home, I also tackled several erroneous medical bills, battled uncooperative customer service reps, and coordinated payment between my immunologist and Help Hope Live. All that on top of recovering from yet another stint with bronchitis. After all was said and done, I was so wiped out from the week that I may have been asleep before my head hit the pillow.
I feel like I have been very honest in this update. I always am. I never lie, exaggerate, or stretch the truth. But today, I’m a little more raw, and I think that’s okay sometimes. Sometimes, when journeys are winding, gritty, and enduring, the sea can get a little rough, the skies a little turbulent. Sometimes, there are tears, anger, frustration, and wavering. I’m not always strong, but I’m always grateful. Sometimes I need time to breathe. Sometimes I have to remind myself that I am one step closer to what I need. Sometimes it’s one day at a time, and other times, it’s one moment at a time. I’m not always strong, but I am always grateful.
One last thing to note: I finally got my SSI hearing date. On March 12, 2020, my life could very well change forever . . . or remain the same. But I’m hoping for good news. Thinking positively. Preparing for the worst, but hoping for the best. I am amassing as much medical evidence as I possibly can before my court date. It’s a figurative fight to the death at this point. Wish me luck.
Thank you all for your donations. Every penny brings me one penny closer to pursuing medical treatments and financial stability. I couldn’t do it without all of you. Much love.
November 1, 2019
It has been quite the whirlwind as of late, but I am happy to report that I was finally able to see an immunologist! Not only that, but they also gave me all the immune deficiency testing I wanted. From start to finish, this has been a massive undertaking.
First, I had to find an immunologist that is familiar with both EDS and CVID. I started by scouring EDS Facebook groups and researching the different options. Some had financial assistance, but they were out of state. Others weren’t familiar with my complex health issues. Ultimately, one doctor’s name kept showing up. We’ll call him Dr. P. After weeks of research, I decided that this was the right doctor for me. I spent the next few weeks filling out new patient paperwork, coordinating payment with HelpHopeLive, and planning the day. Then, five days before my appointment, they cancelled it! I was devastated. They said it was because “my case is too complicated.” I thought that was odd, because multiple CVID patients personally recommended him.
Not to be deterred, I started researching a new doctor. A friend and CVID patient recommended Dr. L, and by the time the day was over, I had everything taken care of and ready to go. HelpHopeLive donations paid for the visit, and a friend graciously agreed to provide transportation.
I had that appointment last week. They performed several breathing tests with a machine called a nebulizer as well as the full scope of allergy tests. The nebulizer is supposed to open the airway up to 20%, and it only opened my airway 3%. They also determined that my lungs are functioning at 111%. The allergy tests then showed absolutely no reactions whatsoever. I didn’t even react to the “control allergen,” which is a basic irritant to make sure my body is responsive. But I was undeterred, as I was there for immune deficiency issues, not allergies.
After generating the order for blood work, the nurse returned with the document in her hand. She initially only ordered the blood test for allergies since I was so non-reactive. But once I explained that I was uninsured and without an income, she reconsidered. I told her that a lab called Quest Diagnostics had financial assistance, and I would be going that route to ease the cost of the tests and spread my donations even further. She felt that, since I was pursuing financial assistance, “we might as well get it all done at once.” So I got all the tests I wanted!
Next, it was time to plan my visit to Quest Diagnostics. After initial transportation plans fell through, I found an alternative. A friend of mine had the week off from work, and he very generously agreed to take me to get all my testing done.
First, I had to drop off a tissue sample at the clinic to test for h. Pylori. This is a bacterial infection of the stomach that causes excruciatingly painful ulcers in the intestines. I’ve attempted to treat it multiple times with prescription antibiotics, but the symptoms just return once the treatment ends. After a bit of back and forth, we got that done. Next stop – Quest Diagnostics!
About 1 to 2 weeks prior to my Quest Diagnostics visit, I called them to ask about their financial assistance policy. They assured me that they do in fact have financial assistance, and that I could just go to my local blood draw lab whenever I want to and get the blood work done. So today, I went. But once they called me back to get everything started, they couldn’t draw my blood without a payment first. No reimbursements, no payment plans, no nothing. The cost was over $900. I needed the testing so badly that I almost paid right then and there. But I knew I wouldn’t have used my donations wisely if I spent more than half of it on one panel of tests. So I went back to the waiting room and called customer service again. I eventually got a live person, but the conversation wasn’t progressing, so I handed the phone to the supervisor of Quest Diagnostics. Together, they figured it out. Customer Service should have mailed me a financial assistance application that I should have completed and taken with me to Quest Diagnostics. So I was going to have to plan transportation again and redo everything once I got the application in the mail. Just to be thorough, I sat down in the waiting room and called customer service a third time to make sure they were sending me the application. While on the phone, the supervisor walked up and handed me the application! I hung up the phone, filled out the application, gave it back to her, and they took my blood right then and there. I can deal with documentation (proof of need) once I hopefully get that information in the mail. I should have the blood test results in time for my November 12th follow-up appointment with my immunologist. And I will be able to afford that follow-up, once again, thanks to donations.
I am also dealing with endocrinology issues. My doctor has theorized that I have PCOS, but all 11 blood tests were negative. In December, I will return to the clinic to repeat them. I will discuss the results a week later at a follow-up appointment. If the results are still negative, there’s a chance I could have a tumor on my pituitary gland. That would require a relatively invasive surgery to remove. I have been monitoring my symptoms and making sure my endocrinologist is aware of every relevant symptom I’ve ever had. Though a surgery sounds daunting, it will strengthen my SSI case, which will increase my chances of winning. If that happens, I will finally, for the first time in my life, have stability.
And if I do in fact have CVID, it will require monthly plasma infusions for the rest of my life to continuously replace the parts of my immune system that are missing. These infusions are $3,000 apiece, although some manufacturers offer financial assistance. This, too, might be daunting to some, but it would strengthen my SSI case, and increase my chances of attaining stability. It would also be a much more effective treatment for the constant illnesses and infections I experience.
At some point, I also plan to pursue ring splints. My geneticist recommends them, and they would help stabilize my hands and fingers and reduce strain and injury. WIthout them, arthritis could set in. They average at around $100 apiece, and you need one to two rings per finger. You also have to pay for a hand therapist visit, who assesses your needs and measures your hands. Some patients need splints on all 10 fingers, while others need only a few rings. The best brand comes from SilverRingSplint.com. they use the best materials, the most precise measurements, and the largest variety. Rubber and plastic are not as effective, so the rings really should be metal. Once I get through more of the endocrinology and immunology mess, I can focus more on ring splints. Donations will of course help with that as well.
Thank you all for being a part of my journey and for your continued support. And thanks for reading!
October 4, 2019
I have more updates to share!
Progress with an immunologist has been slow, but after a few months, I’m finally on my way! Here’s what’s been happening with that:
To find a good immunologist, i started with copious amounts of research. I compiled a list of immunologists that other EDS and CVID patients have recommended in the past. I combed through all my information, comparing all the pros and cons. But the name of one name kept coming up. We’ll refer to him as Dr. P . . .
Next, I spent TWO WEEKS trying to coordinate an appointment. That in itself was a massive undertaking.
First, I had to coordinate payment between Dr. P and Help Hope Live. I went back and forth, making phone call after phone call and sending email after email. Eventually, Dr. P’s office finally seemed to figure things out. I was on my way to getting an appointment!
Then, a few days later, Dr. P’s nurse emailed me to let me know that they don’t treat CVID patients. But countless CVID patients so strongly recommended him. Confused, I called them again and got it all straightened out.
Then, a few days later, they told me they dont take self-pay patients. So I called them once again and got it all straightened out.
A few days later, I learned that I had an appointment on October 7th. I spent more than an hour sending all my medical records over to Dr. P from five different facilities. From there, I planned transportation with a friend. Everything was coming together.
A few days following that, I got a phone call saying they cancelled my appointment! i fought it as much as I could, but there’s nothing I can do. They said my case is “too complicated.”
So I had to start from scratch. After venting to a friend, I pored over old notes and reconsidere my options. I made a few phone calls, but ultimately chose a local immunologist who is familiar with both EDS and CVID. Thanks to donations, I can pay for the visit itself as well as any additional testing. My new immunologist will use either LabCorps and Quest Diagnostics for testing, and both have financial assistance programs. This will further stretch my donations! I’m so excited!
In addition to my immunology goals, my yearly virtual follow-up appointment with my geneticist is just around the corner. And thanks to donations, I can make that appointment, too. And that should strengthen my disability case, as the judge will see that I keep all appointments and make every possible effort to pursue my healthcare goals.
Another exciting development is that I have managed to get another important medical test! Genelex labs sells a medical test called the MedMPact Plus test. It aims to reveal how you metabolize medications. So if certain meds are ineffective, allergenic, or slow to take effect, this test wants to tell you why. I have an extensive history of all of those issues, and this kind of information can keep a patient safer and healthier. Thanks to donations, I was able to undergo that testing, and I can expect the results around October 16, 2019.
I also have another endocrinology appointment on December 11th, and I’ll be that much closer to discovering the cause of my hormone imbalances.
I have never had this kind of access to in-depth medical care before, and it’s a feeling like no other. I feel like I’m making progress, chipping away at it all. I feel like I’m finally starting to regain control of my life, and it’s beautiful. And it’s all possible thanks to donations.
Thank you all for everything you’ve done. I look forward to posting more updates soon.
Until next time!
September 6, 2019
For the past two months, my body has been trying (and failing) to recover from my millionth stint with bronchitis. When my symptoms started, I went to urgent care. The doctor diagnosed me with bronchitis and gave me a steroid, a cough syrup, and an antibiotic. I took every single dose on time and as instructed, and I dedicated myself to self care. But by the time I finished all my medication, I felt even worse. By this point, I was too exhausted to even sit up or talk. Some friends of mine dragged me to the ER, where they gave me fluids, an IV antibiotic, and an oral antibiotic to take at home. By the time I finish all of that medication, I felt no better.
So for 2 months, my fight for healthcare was on hold. I’m still definitely not better, but recently, I’ve been able to resume my usual fight from my bed. I’ve been able to push myself to make phone calls, send emails, and research my options. Over the last two days, in between naps, symptoms, and brain fog, I have spent a total of 5+ hours calling and emailing various people.
First, I found out about a company that offers financial assistance for genetic metabolic testing. That basically means you can find out how well or how poorly your body processes and reacts to medications. That company is called Genelex Labs, and the test is called MedMPact Plus. After a few days of effort, Genelex had the documentation they needed, I was enrolled in their financial assistance program, and I had secured the funds thanks to the generosity of others. Now the test kit is on its way here in the mail. Soon enough, I get to find out why some medications are toxic to me and some take hours to kick in – if they work at all. And if I request or refuse a specific medication in a medical setting, healthcare workers can’t accuse me of drug-seeking.
I also spent ~3 of those hours calling the IRS trying to get ONE document so I can apply for the hospital’s financial assistance on account of my ER visit. The IRS website wouldn’t let me register for an account to request the document online, and the phone system didn’t recognize my information. I was only able to occasionally get a live person by calling the wrong department endlessly. Three of those live people gave me the same advice, which led to the same online dead end. A fourth person said there were too many people calling and using the website. A fifth person finally helped me get what I needed, and it was only two clicks away. I am currently waiting on a document to arrive in the mail. I have to complete that, mail it back, and THEN I can get the document I needed in the first place. Then I can apply for the hospital’s financial assistance.
Next, I worked on my next goal of seeing an immunologist. After researching an EDS-friendly immunologist that treats CVID, I found Dr. Andrew Pugliese. I emailed him and explained everything, and he said to make an appointment at any time. So I planned everything with Help Hope Live, called the doctor’s office and explained everything, got prices and more info, and coordinated finances between the doctors office and Help Hope Live. Everything was going well. Then, the next morning, I got an email saying Dr. Pugliese doesn’t treat CVID… even though his website says they do. They also sent me a link to a list of online EDS healthcare providers. Two were in Georgia, and neither one was an immunologist. I am now repeating this entire process with a new doctor, Dr. Theodore Lee. Help Hope Live is currently negotiating payments. Thanks to donations, I will soon be able to see Dr. Lee and get the testing I so desperately need.
After some scrambling, I also managed to make it to my follow-up endocrinology appointment. The doctor agreed that PCOS isn’t just a fertility issue, and that the NP I saw at my last appointment shouldn’t have neglected to treat me just because I’m not trying to start a family. After some debate, she put me back on my favorite medication, which is already starting to counteract my symptoms. Since all my endocrinology blood work was negative, she ordered repeats, which I must pursue in December. There were also talks of doing some imaging, as negative results with my symptoms can indicate a tumor on the pituitary gland.
And finally, my bronchitis is s-l-o-w-l-y dissipating, and I’m very slowly recovering on my own, 2 months later. I’m not back to my usual self yet, but I can sit up without feeling like I am dying, for example. Four different medications and plenty of self-care didn’t knock it out, but I have bigger fish to fry at this point, as you can see.
When I was taking antibiotics, my horrible stomach attacks stopped. Now that I’m off antibiotics, they’re back again. That’s pretty typical for me. On antibiotics = multiple improvements. Off antibiotics = symptoms as usual. And that’s if the antibiotic work at all. An I’m not catching all these contagious illnesses from anyone. I just . . . end up with them. Over and over again. It smells an awful lot like CVID to me.
My hands now hurt from typing (I need hand therapy and ring splints, but one crisis at a time!) so I feel like this is pretty good update for now. I appreciate you all for reading this, and thank you all for your donations!
August 11, 2019
It seems that I’ve somehow come down with a case of bronchitis that just won’t quit!
I started getting symptomatic about a month ago, so I went to my local urgent care facility. Because I am enrolled in CarePartners, the visit was only $25. Sure enough, it was bronchitis. The doctor gave me an antibiotic, a cough syrup, and an anti-inflammatory. I finished all my medications, and I never missed a dose.
But at that point, I was feeling even worse, so I went to the ER. They have a financial assistance policy in place, so I wasn’t as concerned about the cost. After a bunch of tests, they determined that I still have bronchitis as well as a UTI.
Today is day two of a week’s worth of new antibiotics, and I have now been sick for over a month. I don’t feel any better.
I also end up in significant pain every time I eat or drink anything, and it’s looking like that may be due to an h. Pylori infection that has survived three rounds of antibiotics.
At this point, I need to see an immunologist who understands EDS and the many complicated issues it can cause. I’ve done the research, and I already have a doctor in mind. That’s where your donations come in. The cost of the visit out-of-pocket will be several hundred at least, and I’m sure he’ll want to order some expensive tests. The money I’ve raised so far (and any additional funds I raise) will all go toward the cost of this visit.
Thank you all for the help you’ve so graciously donated.
July 19, 2019
A *MASSIVE* thank you goes out to my first donor! He graciously and selflessly donated $1,000 so that I can reach more of my medical goals!!
I’ve given it a lot of thought, and I’ve done a lot of research, and I have decided to pursue a diagnosis of – and treatment for – my CVID symptoms. This will make the biggest impact on my life right now, and I believe that this choice enables me to stretch my donation as far as possible. I have already researched several immunologists, and I have chosen the doctor I want to see. Some good friends of mine are also donating their time and transportation to get me to this appointment. I am excited to begin this stage of my journey. I am hoping and praying for success as I embark on a new path in my medical care. Thank you again, anonymous donor!
June 27, 2019
My gastrointestinal symptoms are now worse than ever. I’m losing weight every day because I can hardly eat, and I end up in significant pain for 5+ hours no matter what I eat or drink. From what I can tell, I could have gastroparesis as well as a nasty infection. To confirm these diagnoses, I do need testing. But I recently learned that the local indigent care program I am enrolled in does not offer GI specialists. I tried to contact other GI specialists outside of the program, but none of them could give me an exact cost for the treatments I need. They wanted me to establish myself as a patient there first. But I can’t, because I have no health insurance and no income. One receptionist estimated the cost to be several hundred dollars not including testing. That’s where the donations come in.
I am also still in the process of getting my many other comorbidities diagnosed, and that, too, is an expense. Under the best circumstances, I have to pay only for travel expenses. But the indigent program does not have the resources to tackle all of my comorbidities. In that case, I would also have to pay for copays, testing, and treatments out-of-pocket.
Donations are now more important than ever! Please consider helping me navigate the nuances involved in my indigent care.
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July 9, 2019
She says, "Financial stability and health insurance could be on the horizon for me after 11 years of fighting. I can do this!"
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Note in memo:
In honor of Deanna Celeste Brownlee
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087