The story of Dawn
Hi Everyone! Thank you so much for taking the time to visit my page and hear my story… I am going to tell you about my current health and financial situation, as well as share several pics (some not so pretty- that’s your warning)… I am a very recently Diagnosed case of an NIH (National Institutes of Health) Rare Disease called Melkersson-Rosenthal Syndrome (diagnosed 9/14), and I also have another disease as well, called Ramsey-Hunt Syndrome (diagnosed 5/14). I also suffer from Fibromyalgia, and chronic pelvic pain. I will be losing ALL Medical coverage, Rx Coverage, And ALL Assistance, with the exception of $16/mo in food stamps, and my newly awarded ssdi payment monthly. HOWEVER, even though I applied for Disability in 9/2008, I was only awarded retroactive to 4/2013. The Government requires a 24 month “waiting period” before your “Medical coverage” kicks in, even though I have been found disabled, and the state has yet an additional 6 month “waiting period” before ANY medical benefits would be awarded. Because of these “waiting periods”, and the failure of notification from the state, local and federal agencies involved, I was not made aware of this until roughly the first week of April 2015. And today is April 30th, 2015. My last day with insurance coverage, Rx coverage, etc. I have been trying to take this in stride, but unless I can show that I have put out $5,202.00 in “out of pocket medical expenses” from April 1, 2015 through 9/30/2015, I will be without the medications, doctors, specialists, and therapy needed to live with this Rare Disease on a daily basis. I personally Thank you for any support you can provide, as it is greatly appreciated. Even if you can not make a donation, just sharing My story will help spread the word about this rare disease, and hopefully make a call for more studies for those of us that suffer from MRS.
There are several pictures here, some before MRS, then some as recent as 5/7/2015 in an added update. The pics here will show what I looked like until February 4th, 2013- a 34 year old female with a compromised immune system, with both a Bells Palsy history- twice prior to 2/13, once at age 7, and again at age 17, and a history of Pediatric Shingles. Other than that, I was sick a lot- I would catch a common cold and carry it for 2-3 months! Then, what I thought was my 3rd episode of Bells in 2/13 turned out to be anything AND everything but that. And we are STILL without ANY form of treatment for me, as I also have medication allergies… Most importantly, I am allergic to NSAID’s. NSAID’s are one of the most commonly used treatments for MRS… One of the images is me and my Primary Care Doc- I will call him Dr K. He has been my biggest advocate, by far, and has even gone with me to see specialists, as I was beginning to think I was nuts- and with no thanks to these specialists, either. Everyone I would see (from Johns Hopkins to UMMC…) were telling me “Oh it’s just another case of Bells and will clear up soon!”, or “Do you see a counselor?” or just plain “We have no idea what is wrong with you, but when you get Diagnosed, call us!”- but we knew this wasn’t just another case of Bells Palsy. I could FEEL the left side of my face, it HURT and was HOT to the touch. I was abnormally swollen from my face to my arm on the left especially at first, and was RED!!! I also had horrible sores in my mouth. I was also losing weight for no reason at all.
Then, the right side of my face went out (became Paralyzed) in April 2014. So here I was with Bilateral Bells Palsy (Facial Paralysis on both sides of the face at once)- which is Extremely Rare, and that FINALLY got the attention of some “higher up” docs and medical professors here in the Baltimore, MD area. I went through DOZENS of MRI/CT/MRA’s, Ultrasounds, Lymph node Biopsies, Spinal Tap, EMGs, numerous labs and blood tests, mental evaluations, and so much more. I have some bilateral, frontal lobe brain lesions. Although non-specific lesions, they were not there when this all began 2 years ago. They showed up on the 2nd or 3rd MRI, early into my medical issues with MRS. They have multiplied, and there is now also abnormal areas appearing in my C-spine on my last MRI.
Now we are at a point of stand still again. It took over a dozen physicians, 4 hospitals and about a year and a half for ANY diagnoses. My case is different in that I have the swollen lips, just not often as most with MRS suffer from, but instead, I have facial swelling, facial paralysis, I can’t open my mouth more than half an inch some days, I get ulcers in and around my mouth, and most recently, even one on my nose. I also have severe short term memory loss, speech slurring, and words coming out in the wrong order when I speak, and eye migraines. I also have tinnitus, or ringing in the ears, that lasts for days. I have lost approx 80lbs since 2/13 as well with very little change in diet. So Dr K and I have contacted NIH, NINDS, and NORD, but still have no treatment plan, or options, for me yet.
I can not thank you ALL enough for spreading the word abut Melkersson-Rosenthal Syndrome. With every share of this page, whether you can make a donation or not, another person learns of this NIH Rare Disease, and hopefully, if the right person sees this, there could be one more cause for a study, at the very least. I can no longer work, as dr appts are now my full time job… Please feel free to research MRS and RHS. I guarantee you will learn something new.
UPDATES: We have (Myself and my PCP, Dr.K, have made contact with BOTH NIH and NORD, but so far, have STILL no Treatment, Clinical Studies, or even an Evaluation, from ANY of these National Organizations. I have also been told that I would be able to see one of my specialists, the one that diagnosed my MRS, however, now I am being told by the “Gate Keeper” at his hospital that I will not be able to be seen by him unless I go in and am admitted via the ER. This will happen, and be yet ANOTHER financial resposibility, if I can not be seen otherwise in the next two weeks. I am in a full flare up of both diseases at this time, and in an incredible amount of pain, and chronically exhausted.
I am doing my very best to stay POSITIVE 🙂 and to keep my head up throughout this rough time. I can not say “THANK YOU!!!” Enough to ALL that have Read, Shared, Given Advice, Listened, and Donated to me. You have no idea how much this ALL has helped me. Without your donations here, I would have had NO Rx’s for the past 2 months, nor would I have been able to continue seeing my Primary Care Physician. I THANK YOU ALL SO VERY MUCH! Any help you can give is SO Appreciated. Thank you <3 <3 <3 Update- Well, yesterday was a tough one… It was the “Deadline” day where I had to make a choice on 2016 Medicare selections for the very first time since being granted SSDI… So, after over 6 hours on the phone with at least 6 different people, we went for Part D (Rx Coverage) only at this time. Our reasoning for this is was many, but mostly because I am not on all the Rx’s now that I need to be because I can’t afford them. The other Main reason was that there are No options given with Medicare for Gap medical insurance that my PCP AND all of my Specialists take, AND I was told I need to Re-apply for MD Medical Assistance After the first of the year. I plan to do so, and sincerely hope and pray to get back the coverage I had, or some form of medical assistance. I am STILL in desperate need of labs, medical imaging tests, Rx’s I had to drop due to cost, and to see my specialists. I am also working on the MD “Medical Spenddown” showing ALL of the monies used for all medical care, Rx’s, dr’s visits, and existing medical debt I have gained since April 1st, 2015. We will probably see if we can do some of these tests and just add them to my existing medical debts. We can’t figure out another way to do this, and my brain needs to be imaged as soon as possible. I still have a LONG road ahead, and I won’t know if I will be granted the medical assistance I need now until roughly February of 2016. Thank you all again for sharing my story, for your support, your guidance, kind words, and donations throughout this time. I wish you ALL a Very Happy Holiday Season, and a Happy and HEALTHY New Year <3 - Dawn You can also see pictures on my GoFundMe page, read my Rare Disease updates, etc, by clicking here: https://www.gofundme.com/dawnneedsinsurance