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<div>Hey Friends &amp; Fam,


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<div>I am Emily. I have a rare genetic connective tissue disorder called Hypermobile Ehler’s Danlos Syndrome with Vascular like tendencies. I have struggled with chronic health issues from birth. I am now 35, on Palliative care, fully disabled &amp; unstable. I was not properly diagnosed until the age of 32. I’m trying to get to specialist who understand my condition. I have sought treatment &amp; now could use some help. I’m currently getting to the correct specialists, but traveling for care, getting there, staying in hotels has depleted me. My body is now struggling as well from misdiagnosis and lack of care! 


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<div>Also, insurance does not cover a lot of things! There are treatments available to help me to have a better quality of life. A lot of those are going to be surgeries &amp; rehabilitation after. Unfortunately, with Ehler’s Danlos, one has to travel to different places. It’s not a one stop thing. We have to travel to the specialist that deal with each specific body part who know about hEDS/vEDS. If you can please help me, I would be so very appreciative. If not, pass this on, send up prayers, or good vibes, whatever you believe in my friends.


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<div>I will keep updates &amp; if I’m unable my mom can provide them. Thank you for taking the time to read this. Well wishes to you and yours.


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<div>Emily


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Emily’s Quality of Life Journey

<div>Updated 10/23/22
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<div>Hello, I'm April and I've been disabled for over 3 years. It was caused by a traumatic injury to my jaw and neck during a simple procedure, and I had no idea my life would change that day. 2 years and 2 months after symptom/illness onset I have finally gotten some possible answers. Cervico Medullary Syndrome i.e. brainstem compression causing neurological symptoms, nervous system dysfunction, gastro issues, and pain, most likely brought on by craniocervical instability of my neck/skull junction. The pictures below are from the assessment my neurosurgeon Dr Paolo Bolognese sent me after our consultation with my diagnoses and tests he would like me to have done:
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</div><img alt="58744477_1631754800320544_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631754800320544_r.jpeg" width="100%" /><img alt="58744477_1631754853203029_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631754853203029_r.jpeg" width="100%" /><img alt="58744477_1631754883514534_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631754883514534_r.jpeg" width="100%" /><img alt="58744477_1631755449520_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631755449520_r.jpeg" width="100%" />
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<div>Here are some of the things I experience with cervical medullary syndrome below:
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</div><img alt="58744477_1631751825157289_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631751825157289_r.jpeg" width="100%" />
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<div>The next thing the neurosurgeon suggested is fly to New York and see my him in person and have a procedure called Invasive Cervical Traction. If my symptoms improve during invasive traction, I will be a candidate for cranio-cervical fusion. This is where the neurosurgeon will fuse my skull to from c-0 to c-2 with metal plates and screws to keep my neck in the proper place and keep the brain stem uncompressed and help hold my head up for me since my neck/collagen is too damaged to do this on it own. This would be scheduled a few months later so it will mean a SECOND, longer trip/stay in New York if surgery happens. Dr Bolognese said my quality of life was 50% compared to a healthy, able bodied persons based on the Karnofsky Scale, often given to cancer patients. Here is a video from Dr Bolognese as well describing Craniocervical Instability:
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</div><iframe media_type="0" media_id="zUdwvBDnWpE" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/zUdwvBDnWpE/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
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<div>There is also another less invasive option for treatment at Regenexx Stem Cell clinic Dr Bolognese mentioned in Colorado for craniocervical instability. This is 12k for one treatment all paid UP FRONT. It is NOT covered by insurance in any way. There are no payment plans that I am aware of after consulting with them but they did say i am a candidate for the procedure. This would be my first option to try before surgery if we could afford it. We have exhausted all other conservative measures and it is a rare issue with rare solutions. The recovery time is much shorter and there are much fewer complications. There is no guarantee to any of these things "curing me." Its all just a gamble at improving my quality of life currently.
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<div>Flight costs from Missouri to New York or Colorado for my partner Josh and I will be hundreds, plus money while we are there and lodging. And any down payments for my ICT procedure and other tests (or stem cells if we can afford to try that first.) If fusion comes after or I worsen quickly to the point I need it asap, we will cross that bridge when we come to it, but any money made here will go towards that as well if any is left over. 
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<div>I have already taken out loans to cover the medical debt I've amassed in just two years going through a ton of diagnostic testing and doctors just to get to this point. I am stuck working full time at home because my job denied me disability insurance due to pre-existing conditions and am worsening. It hurts to even sit up all day with the weight on my neck and brainstem without support. I cannot lose my income or health insurance or home and just stop working, so when the time comes to have these tests or procedures done there will be many unknowns. I will most likely be on unpaid fmla leave. I also have current medical bills incoming from recent visits and diagnostic tests because I have comorbities caused by the brainstem compression and see other specialists. Here is a recent bill final notice I am needing help paying off:
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</div><img alt="58744477_1631755151606048_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/58744477_1631755151606048_r.jpeg" width="100%" />
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<div>Dr Bolognese, my neurosurgeon, took me two years to find because he is the best, but one of 3 in the U.S. who even helps people with my condition. I have researched endlessly online reading medical journals, finding support groups with other people with craniocervical instability, been gaslit by the medical system, facing ableism and cost barriers, seen over 35 doctors, and fighting to survive. It is a condition most have not even heard of. 
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<div>I want my life back. I want my vision back. I want my mind back. I want to not be stuck in this state of physical terror 24/7. I want to feel like myself again. I am 27 battling brainstem compression and fighting everyday for the hope this is possible. I have seen Dr Bolognese make this possible for other people as well as the doctors at Regenexx. We finally got answers, now money is the only obstacle. So please, keep fighting with me to get me there! ❤
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<div>(Here is a video below if you'd like to know more! I have a YouTube channel chronicling my medical journey)
</div><iframe media_type="0" media_id="-MmuF9U2KrY" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/-MmuF9U2KrY/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
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Help Get April's Neck and Brain Fixed!

Andria Hay

<div>What happens if you get sick and there’s no safety net to catch you? Have you ever asked yourself that question? As a chronically ill person, I have, and it’s terrifying. I’m extremely lucky to have a supportive spouse and really good medical insurance, but it’s still a struggle. <strong>My friend Andria has no safety net and is very sick, and she needs your help.</strong>
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<div>She has a complex genetic condition called Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that causes joint hypermobility. It has many forms and causes myriad symptoms, and with it come mast cell activation syndrome and dysautonomia. Some people with EDS can barely tell they have it. Others are uncomfortable and inconvenienced. Others become very sick. Some become disabled. <strong>Andria is disabled.</strong>
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<div>It took years for her EDS to be diagnosed, making her health problems more severe. She developed something called cranial cervical instability and tethered cord syndrome. Both of these issues required intense neurosurgeries.
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<div>During that time, Andria’s mom became terminally ill. Andria moved onto her mom and stepfather’s land to spend as much time with her mom as she could before her mom died. Between moving, surgeries, and denied disability benefits, Andria fell into debt, but she will never regret the time she spent at her mom's side.
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<div>On her mom’s deathbed, Andria and her mom were both promised that Andria would have a place on that land for as long as she needed it. So, after winning her court case, she finally received her disability benefits and a small back benefit compensation package and was able to buy a mobile home. But, very shortly after she bought it, her stepfather remarried, and she was evicted from his property. She was given no notice and no financial help. And her step father, her only living parent, cut off all contact.
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<div>Now, on top of losing her mom and her step father and the home she knew, her sugical and moving debt is being made worse by the fact that she has to pay a lot-rental fee that she didn’t include in her budget when she bought her home.
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<div>Andria has no local support system. She is in an emotionally neglectful relationship that is draining her physically and mentally. She is responsible for taking care of the house and the bills and doesn’t get any help. Her vehicle has fallen into disrepair because it was being used by her spouse who didn’t take care of it. She just fell down the stairs because her husband never put the deck that came with the house on her mobile home. She has no one to help her make decisions or take action on the decisions that are made. She has no one to help her with the physical tasks she can’t do herself. Her spouse is financially irresponsible and emotionally distant. He watches her cry and says nothing. He sees her struggle and doesn’t offer help. <strong>Andria is separated and is now living alone.</strong> <strong>She desperately wants a divorce but can’t afford to keep living alone while she is in debt, and can’t even afford to file for divorce.</strong>
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<div><strong>the money from this fundraiser is being kept safe. Be reassured that only Andria has acccess to theses funds. Thank you for anything you can give. </strong>
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<div>Andria is the hardest working person I know. The only reason she doesn’t work is because she can’t. Many days, she is too ill to get out of bed. None of these circumstances were or are in her control. She is a financially responsible person. Her debt has been caused by a severe medical condition that took years to diagnose, the snail's pace and forced legal fight to receive the disability benefits she’s entitled to, and the neglect of people who should be there to help her.
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<div>She is my best friend and the best person I know. I could not make it through my medical journey without her support and friendship. But we live 1000 miles apart, and I'm also really sick. I can only be there in spirit. I can't fix this the way she deserves and needs it to be fixed. <strong>She deserves financial security and to live in a home that is physically and emotionally safe, where she is free of this relationship that isn’t good for her.</strong>
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<div>There is no financial safety net for Andria and people like her. She has nowhere to turn. Her disability benefits barely cover her living expenses. <strong>She will never be able to dig herself out of this hole unless she has help. She will never be free of this unhealthy relationship unless she has help.</strong> Please donate anything you can or share her story so Andria can have the safety net she, and we all, deserve.
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Donate to Secure Andria's Safe and Stable Future

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Andria Hay

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Highlights

Donate to Secure Andria's Safe and Stable Future

$3,394 raised

Emily’s Quality of Life Journey

Help Get April's Neck and Brain Fixed!

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Andria Hay

Discover more people

Highlights

Donate to Secure Andria's Safe and Stable Future

$3,394 raised

Emily’s Quality of Life Journey

Help Get April's Neck and Brain Fixed!

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