Please Help Disabled Alésia Make Ends Meet
Donation protected
The shorter version:
I suffer from rare, immune-mediated disorders affecting two types of white blood cells - eosinophils and mastocytes (meaning my body perceives innocent foods or smells as a threat and goes into overdrive trying to attack these triggers and ends up attacking me instead) as well as a neuro-immun disorder (meaning there's inflammation in my brain that prevents me from thinking clearly and my mitochondria don't produce energy for me to burn, so I'm unable to do much mentally or physically). 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, buy groceries, and cook. I've tried going back to work multiple times, but over-exerting myself only aggravates the situation. I finally accepted that I needed help, but help has been incredibly hard to find. That's why I've been homeless since 2016. I normally find CouchSurfers to stay with, so I don't end up on the street, but no one will host me now, so I need to pay for a place, but I don't have money cuz I can't work. Please help!
You can donate directly through GFM, but they take a 5% fee and have a 1 week processing time:
Or you can also make one-time donations via PayPal or set up monthly transfers via Patreon:
.me/aChevaleret
http://patreon.com/uninvisible
=====
The longer version:
I first felt something was off in 2010. I went to different doctors every couple years, but they didn't see anything wrong. I was still able to live a normal, productive life, complete my studies and begin working, while finding time for friends and travels.
In 2015, things got worse, so I began seeing specialists. I took some time off work, but could barely function. As my leave came to an end, biopsy results revealed multiple rare diseases.
I thought I could get it under control and go back to my normal life before I knew it, but I tried switching to a less strenuous job with less hours in the meantime. I still could barely manage to get through the day and things didn't get any better. I tried taking even more time off work, while seeing rare disease specialists and trying any treatment they'd prescribe me, but nothing helped. I tried going back to work again, but the more I pushed the worse things got.
It got to the point where I was worried I wouldn't even have the strength to care for my basic needs and I had no one to help me. I finally turned to my family, but they didn't understand - I was on my own.
I wasn't able to work anymore and, without income, I couldn't pay rent either. I moved out of my last home April 2016 and began CouchSurfing - I found people online who allowed me to sleep on their couch for a few weeks at a time. Since I was too sick to go anywhere, my hosts never had time alone, so things would become pretty tense and I'd have to move to another host. The generosity of these strangers is the only way I managed to stay off the street for all these years and for that I consider myself incredibly lucky!
But now no one's willing to take me in. This past year I've stayed in one place much longer than I ever have since becoming homeless, but the house was left abandoned in a very humid climate for years and now has a mould problem that won't go away. It's making me so sick that my food intolerances have gotten much, much worse. Every time I eat, I get sick. I'm losing weight, because I can barely eat, but I still keep getting sick.
Mould can trigger severe health problems in someone healthy. With my pre-existing health problems, living in a mouldy house is a huge risk! I really need to go somewhere else, but since I can't find a host, my only option would be to pay for a place to stay.
I haven't been able to get government aide, so I've also been depending on the kindness of anyone willing to help in order to pay for food. I never want to spend money on anything other than food, even if my clothes are totally worn through, but the foods I'm able to safely eat are more expensive than average. I only manage to shower every 4 days and only have the energy to go outside once a month, so I can't go to the store or cook for myself anymore. Luckily, there are places that deliver foods I can eat, but that's even more expensive.
Now I really don't have a choice though. I've spent the past 4 years trying everything I can to change my situation and contacting every organization that's supposed to help people in need, but nothing's worked. This is the only way for me to survive now. It's incredibly hard to ask for help, but I can't do it on my own anymore. I need your help to get by!
Thanks so much for reading, I hope you'll donate, if you can! If you can't, please share, so I can reach people who can donate! I barely have the energy to share this myself, so you'd be doing me a huge favour and I'd really appreciate it!
=====
Information about my specific Diagnoses, if you're interested the deep dive:
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 my fault for being carelessness) and not eat anything I’m allergic to (who would?!). It wasn’t until after my second bolus impaction in 2015 that I began educating 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 and 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 (they prefer to focus on another mast cell disorder, called Mastocytosis) and prefer to prescribe different treatments and see how they work rather than testing to confirm the diagnosis. This is because testing is very difficult. Most labs don't have mast cell tests listed as an option in their system, don't know how to properly handle the samples to get accurate results, and with MCAS 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 with the training to know what needs testing and how to do it. That’s why I was hospitalized for several days in 2018 for an MCAS research team to do all necessary testing to confirm the diagnosis.
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 seeps under the door and causes a reaction, keeping me bed-bound for the next 8 hours. If I eat or drink anything aged, like wine, pickles, capers, sardines, 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 even when the skin was raw. The itching continued for months and there was doing any of the specialists I saw could do to help!
But again, I count myself lucky, because many MCAS patients can react to such basic triggers as natural sunlight or tap water, can’t handle any scents at all, even the smell of hand sanitizer, and have to wear masks in public or live in a hypersterile bubble unable to ever go out.
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 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 much 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. At my worst, 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 handle any screen time. I’d lie still for hours unable to do a thing!
I was accepted to Harvard Medical’s online program in 2019, 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.
I suffer from rare, immune-mediated disorders affecting two types of white blood cells - eosinophils and mastocytes (meaning my body perceives innocent foods or smells as a threat and goes into overdrive trying to attack these triggers and ends up attacking me instead) as well as a neuro-immun disorder (meaning there's inflammation in my brain that prevents me from thinking clearly and my mitochondria don't produce energy for me to burn, so I'm unable to do much mentally or physically). 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, buy groceries, and cook. I've tried going back to work multiple times, but over-exerting myself only aggravates the situation. I finally accepted that I needed help, but help has been incredibly hard to find. That's why I've been homeless since 2016. I normally find CouchSurfers to stay with, so I don't end up on the street, but no one will host me now, so I need to pay for a place, but I don't have money cuz I can't work. Please help!
You can donate directly through GFM, but they take a 5% fee and have a 1 week processing time:
Or you can also make one-time donations via PayPal or set up monthly transfers via Patreon:
.me/aChevaleret
http://patreon.com/uninvisible
=====
The longer version:
I first felt something was off in 2010. I went to different doctors every couple years, but they didn't see anything wrong. I was still able to live a normal, productive life, complete my studies and begin working, while finding time for friends and travels.
In 2015, things got worse, so I began seeing specialists. I took some time off work, but could barely function. As my leave came to an end, biopsy results revealed multiple rare diseases.
I thought I could get it under control and go back to my normal life before I knew it, but I tried switching to a less strenuous job with less hours in the meantime. I still could barely manage to get through the day and things didn't get any better. I tried taking even more time off work, while seeing rare disease specialists and trying any treatment they'd prescribe me, but nothing helped. I tried going back to work again, but the more I pushed the worse things got.
It got to the point where I was worried I wouldn't even have the strength to care for my basic needs and I had no one to help me. I finally turned to my family, but they didn't understand - I was on my own.
I wasn't able to work anymore and, without income, I couldn't pay rent either. I moved out of my last home April 2016 and began CouchSurfing - I found people online who allowed me to sleep on their couch for a few weeks at a time. Since I was too sick to go anywhere, my hosts never had time alone, so things would become pretty tense and I'd have to move to another host. The generosity of these strangers is the only way I managed to stay off the street for all these years and for that I consider myself incredibly lucky!
But now no one's willing to take me in. This past year I've stayed in one place much longer than I ever have since becoming homeless, but the house was left abandoned in a very humid climate for years and now has a mould problem that won't go away. It's making me so sick that my food intolerances have gotten much, much worse. Every time I eat, I get sick. I'm losing weight, because I can barely eat, but I still keep getting sick.
Mould can trigger severe health problems in someone healthy. With my pre-existing health problems, living in a mouldy house is a huge risk! I really need to go somewhere else, but since I can't find a host, my only option would be to pay for a place to stay.
I haven't been able to get government aide, so I've also been depending on the kindness of anyone willing to help in order to pay for food. I never want to spend money on anything other than food, even if my clothes are totally worn through, but the foods I'm able to safely eat are more expensive than average. I only manage to shower every 4 days and only have the energy to go outside once a month, so I can't go to the store or cook for myself anymore. Luckily, there are places that deliver foods I can eat, but that's even more expensive.
Now I really don't have a choice though. I've spent the past 4 years trying everything I can to change my situation and contacting every organization that's supposed to help people in need, but nothing's worked. This is the only way for me to survive now. It's incredibly hard to ask for help, but I can't do it on my own anymore. I need your help to get by!
Thanks so much for reading, I hope you'll donate, if you can! If you can't, please share, so I can reach people who can donate! I barely have the energy to share this myself, so you'd be doing me a huge favour and I'd really appreciate it!
=====
Information about my specific Diagnoses, if you're interested the deep dive:
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 my fault for being carelessness) and not eat anything I’m allergic to (who would?!). It wasn’t until after my second bolus impaction in 2015 that I began educating 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 and 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 (they prefer to focus on another mast cell disorder, called Mastocytosis) and prefer to prescribe different treatments and see how they work rather than testing to confirm the diagnosis. This is because testing is very difficult. Most labs don't have mast cell tests listed as an option in their system, don't know how to properly handle the samples to get accurate results, and with MCAS 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 with the training to know what needs testing and how to do it. That’s why I was hospitalized for several days in 2018 for an MCAS research team to do all necessary testing to confirm the diagnosis.
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 seeps under the door and causes a reaction, keeping me bed-bound for the next 8 hours. If I eat or drink anything aged, like wine, pickles, capers, sardines, 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 even when the skin was raw. The itching continued for months and there was doing any of the specialists I saw could do to help!
But again, I count myself lucky, because many MCAS patients can react to such basic triggers as natural sunlight or tap water, can’t handle any scents at all, even the smell of hand sanitizer, and have to wear masks in public or live in a hypersterile bubble unable to ever go out.
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 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 much 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. At my worst, 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 handle any screen time. I’d lie still for hours unable to do a thing!
I was accepted to Harvard Medical’s online program in 2019, 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.
Fundraising team (2)
Alésia Chevaleret
Organizer
Bielefeld
Hibah M
Team member
