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My Rare Disease Rescue Fund

COVID-19 / Coronavirus Update:

Although I've been dependent on this campaign for the past 3 years, it was never enough on it's own. When I was getting regular donations, they covered at most half the cost of my food. But most of the time I wasn't getting any donations at all and was lucky to have friends who could support me. Now one of those friends has lost his business due to covid lockdown and another is severely mentally ill. I have no one else I can turn to who's both willing and able to help. If it was hard to get donations before, imagine how much harder it is now when everyone is struggling! 

Now I'm also stuck with no one who can host me for free, so I also have to pay for accommodation. Since I never got enough donations to cover the cost of rent, I've been couchsurfing with people for free, but that's not an option now. I've also been feeling much weaker and don't have the energy to go to the store and prepare my own food. Luckily, I am able to order food, but it's very expensive.

So I need more than usual to cover the increased cost of food + money to pay for accomodation - the people who're normally there to help when donations fail = I could really use your help! 

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Hi everybody!

Many of you are aware that I've been living and working abroad. Please don't mistake that for living a dream. I've really been struggling and the glimpses you might've seen don't paint a complete picture. 

I suffer from rare, immune-mediated disorders affecting two types of white blood cells - eosinophils and mastocytes - as well as a neuro-immun disorder, meaning my body perceives innocent foods or smells as a threat and goes into overdrive trying to attack. To reduce symptoms, I'm limited to a very restricted diet, but still struggle with extreme exhaustion.

It's not the kind of thing you can push through and I struggle just to shower, get to the store, and cook. I've tried going back to work multiple times, but over-exerting myself only aggravates the situation so I've finally accepted that what I'm dealing with is just as real as diabetes, cancer, or paralysis (in that you can't just wish it away) and that I need help.

I've got medical expenses that are not covered by insurance, the cost of special dietary needs, and no place to live or income to live off of.  

 

Updated November 2019:



DIAGNOSES

Eosinophilic Esophagitis (EoE)

An eosinophil is a type of white blood cell, named for the red dye Eosin that’s used in staining. With eosinophilic disorders, either your blood eosinophil level is too high or you have them in areas of the body where they shouldn’t be. In my case, I have them in my esophagus. The inflammation they cause narrows the esophagus, which leads to choking, reflux, chest pain, and difficultly swallowing.

I was diagnosed in 2013 after my first bolus impaction. That means I was eating and a piece of food got lodged in my esophagus. That was the first time I couldn’t dislodge it on my own, so it had to be endoscopically removed. I waited 4 hours before going to the ER, thinking I could force it down or cough it up, but every 90 minutes the saliva build-up above the impaction would flow into my airway and cause me to choke and heave to avoid suffocating. Once I spit the saliva up, I could breathe normally again, but the piece of food stayed lodged. In the ER, they stuck a tube up my nose and down my throat to make sure my airway was clear, then told me to wait another 8 hours until the doctor came in the next morning. The next day the scope was used to push the lodged food down into my stomach.

At the time I was told to chew more carefully (as though it were the result of carelessness) and not eat anything I’m allergic to (who would?!). It wasn’t until after my second bolus impaction in 2015 that I educated myself, using resources from organizations like CURED (Campaign Urging Research for Eosinophilic Disease), that I understood most doctors aren’t aware of EoE, because it’s a rare disease and hardly any funding is going into research. There’s no FDA approved treatment, but it’s scary how many more patients are being diagnosed every year!

Once I learned there are common triggers that aren’t true allergens and removed these foods from my diet, the years of damage to my esophagus finally healed and symptoms like choking and chest pain disappeared. If I eat those foods again, the symptoms reappear, so I would say my EoE is in remission as long as I stick to a limited diet. I consider myself lucky, because many patients have to have their esophagus stretched so they can swallow even just water or are forced to survive on hypo-allergenic formula, because they don’t tolerate any foods at all.

For more information on EoE itself and my experience with it, see here: 

https://www.youtube.com/playlist?list=PLt4s62xomN-AlG0vhPGlMhyAPoUc5hVXg

http://curedfoundation.org/

Mast Cell Activation Disorder (MCAS)

Mast cells, or mastocytes, are another type of white blood cell. With MCAS they’re overactive and either degranulate (explode), releasing mast cell mediators (chemicals like histamine and other amines, tryptase, heparin, prostoglandin, and many others) or they “leak” these chemicals without degranulating. MCAS is also an underfunded, under-recognized rare disease that is incredibly difficult to diagnose, not only because even most mast cell disorder specialists aren’t familiar with it and don’t see the need to confirm the diagnosis, but also because you can only get positive results when testing during an acute reaction, which is usually life-threatening anaphylaxis. And when you’re in the ER, you’re not in the best situation to find people who know what needs testing and how to handle the samples. That’s why I was hospitalized for several days to do all necessary testing by an MCAS research team to confirm the diagnosis in 2018.

Due to my MCAS, I’m very sensitive to synthetic smells and high-histamine foods. This means, if someone mops the floor, the smell of the cleaner then seep under the door and causes a reaction, keeping me bed-bound for the next 8 hours. If I drink wine, I often feel incredibly drowsy for most of the next day and, once I finally wake up, am unable to do anything for the rest of the day. If I have caffeine or gluten, I could break out in itchy hives (chronic urticaria). The first time this happened, it was triggered by gluten and I couldn’t stop scratching until the skin was raw. The itching continued for months!

But again, I count myself lucky, because many MCAS patients can react to such basic triggers as sun or tap water, can’t handle any scents at all, and have to wear masks in public or live in a hypersterile bubble.

For more information on MCAS itself and my experience with it, see here:

https://www.youtube.com/playlist?list=PLt4s62xomN-CDCzUn4SC3azYsWzV6cwsq

https://tmsforacure.org/.../symptoms-and-triggers-of.../

Myalgic Encephalomyelitis (ME)

Myalgic Encephalomyelitis in laymen’s terms translates to “inflammation of the brain and spinal cord. ME actually isn’t a rare disease, but is still very much under-diagnosed and largely ignored by the medical community. It’s been recognized by the World Health Organization as a neuro-immune disorder since 1969 and has a lower Quality of Life Index score than diabetes, colon cancer, multiple sclerosis, and chronic renal failure, yet for some reason, it’s not a recognized diagnosis in most countries and receives less funding for research than it should. For illnesses of similar burden and prevalence, approximately $200 million per year are allotted to research in the US, but ME gets less than $6 million per year.

ME is being studied by a research team at Stanford, but the wait to be seen was over 2 years, so they stopped giving new appointments. In Germany, only the Charité in Berlin sees ME patients, but they only take patients who live in Berlin. In France, there’s no center to turn to. Either way, all they can do is run tests, but (as with MCAS and EoE) there’s no actual treatment, let alone a cure. Instead ME is diagnosed when the key symptoms are observed for a period of at least 6 months, namely: incapacitating fatigue, profound difficultly concentrating and post-exertional malaise, which is a disproportionate level of exhaustion after the most minimal exertion.

A longitudinal study I’m participating in, included an ME-adapted Karnofsky Scale on which I scored at 50% of normal, healthy capacity and that’s considered to be mild ME! That means I can only accomplish 3 tasks a day, but something as seemingly simple as showering counts as a full task and I have to rest for awhile afterward, which is why I usually only make it to buy food and to doctors’ appointments and little else. When I first started this campaign I was at just 30% and could barely support my own weight standing. Even lying propped up on pillows was often too much and I’d have to lie fully flat and couldn’t even get online. I’d lie still for hours unable to do a thing!

I was accepted to Harvard Medical’s online program this year, but had to withdraw, because I could devote all my energy to concentrating on lessons, to the point where I couldn’t do anything else productive all day, and still couldn’t manage to keep up. I may look fine walking, but as soon as I walk up a flight of stairs, I feel light-headed and can’t think clearly. I may write fine, but as soon as I try to read, it’s the same. If I really push myself I can focus on something mentally strenuous for up to 30 minutes, but then I have to rest for hours. If I get caught up in something important and push myself beyond that, I'll be miserable for days.

For more information on ME itself and my experience with it, see here:

https://www.youtube.com/playlist?list=PLt4s62xomN-DQiD_ihr4-ksfWTODKfj3g

https://www.meaction.net/about/what-is-me/

I have a whole list of other diagnoses (where there’s one chronic illness, there’s bound to be several others), but these are the most debilitating.





THE PLAN

Of course I realize I can’t rely on donations forever and never planed for this to continue on this long, I just have the misfortune of none of my plans having worked out so far.

When I first started this campaign, I was working on getting residency for medical reasons in France and then in Germany. I could’ve gotten residency as a student (if I had enough money) or to work (if I had been able to work), but those were no long feasible options. The only path that remained open to me was using my severely sick body to bring a new life into the world or legally binding myself to another person. Neither of which are things I’d do on a whim, just for the sake of giving myself some much-needed stability. Unfortunately, I wasn’t able to get medical status, because it’s only intended for temporary stays, but it did allow me another year and a half while waiting for a decision, which I used to have further testing done and to try more treatments.

Now I’ve reached the point where I’m not sure how to move forward. 

Thanks for clicking and reading. If you can't donate, please share! And if you have any questions, don't hesitate to ask!

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http://paypal.me/alesia.chevaleret

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Fundraising team (2)

Alésia Chevaleret
Organiser
Paris
H Mahi
Team member

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