Give Angèle a future:
her own place with Rumination Syndrome!
Angèle has been living in her bus for 5.5 years.
This makes her recovery from Rumination Syndrome simply impossible.
She urgently needs a safe, stable home base.
Your support is the difference between survival and giving her the chance of a future.
Watch and read her inspiring story!
Updates
Curious?
Rumination Syndrome is a rare and poorly understood condition in which food is regurgitate unintentionally and without control. This usually happens within minutes to two hours after eating, without nausea. It can lead to weight loss, malnutrition and social discomfort. The cause is often unknown. Rumination Syndrome can be confused with reflux, unexplained vomiting, bulimia or anorexia nervosa.
I need support to travel to America for specialized medical treatment that can improve my health and quality of life, something that is not yet possible in the Netherlands. The costs for travel, unreimbursed medical care and accommodation are high. That’s why I’m asking for financial support and help spreading my story. With all the help, the dream for a livable future comes closer!
Rumination Syndrome affects every aspect of my daily life. My vomiting cup is always within reach, day and night. The process of eating and vomiting takes an average of 6 hours a day, in addition to shopping and preparing meals. Food should be soft and blended to prevent throat bleeding. These hours of eating and vomiting are often lonely. Every day the question “Where can I empty my spittoons?”. (Minimum 8 spittoons of 2 liters.) The constant uncertainty about work, social contacts and finances weighs heavily. Social isolation due to fear and shame is a reality. Outings such as going out to dinner or parties are uncomfortable. Even small moments of pleasure, such as a cookie with tea, popcorn at the cinema, an ice cream on the beach or a mint, require my vomining cup. This constant struggle leaves little room for work and other activities. Rumination Syndrome is often misunderstood, which increases feelings of isolation and uncertainty. Watch the Netflix documentary for a clearer picture of the content and impact. (Link on website.)
America leads the way in research and treatment of Rumination Syndrome through their extensive clinical experience and multidisciplinary approach. My medical details are known there, and my examinations have been carried out there in recent years. After four years of misdiagnoses in the Netherlands, America provided clarity about my prognosis. American specialists have already meant a lot to me in the neurological field. I trust their expertise, both for neurological aspects and for the knowledge of Rumination Syndrome, which gives me hope for improvement
The health consequences of Rumination Syndrome are diverse. Throat bleeding can last for days, making even swallowing saliva painful and making speaking difficult. Spitting up often causes a ‘hangover’ feeling. The acid from reduced diets damages tooth enamel, making regular dental visits necessary. Permanent weight loss makes sitting or lying painful when I feel my bones. The constant muscle tension due to repeated spitting leads to physical fatigue. Mentally there are feelings of uncertainty, frustration, stress and gloom. Dehydration is a constant concern and hypothermia resulted in a hospital stay last year as my body copes less well with physical stress. The future consequences of Rumination Syndrome are unknown, which adds additional uncertainty to my health.
Due to the consequences of my acquired brain injury (NAH) and Rumination Syndrome, I was no longer able to perform my work as a lighting technician. This led to financial challenges, which ultimately led me to decide to sell my house. With the profit I was able to finance important treatment in America, taking a big step towards recovery from NAH (non-congenital brain injury.)
In America, medical research is often more varied and innovative due to intensive research and large investments in healthcare. Doctors have more freedom in interpreting results, which can lead to more personalized diagnoses. In the Netherlands, standardized procedures are followed, with less variation in technologies and interpretation of results.
This GoFundMe is intended for emergency medical treatment that is necessary for my health and well-being. The previous fundraising campaign focused on my acquired brain injury (NAH) and trial treatments for Rumination Syndrome.
Positive as I am, I expect improvements to be achieved with medical knowledge in America! One of the goals is to come back with a few extra pounds! A reasonably ‘normal’ life with less isolation, fewer vomiting cups but above all a healthy body would be a great first step towards making new dreams come true!
My day starts with a check: how does my body feel? How did I recover from evening vomiting? Is my throat okay? Can I still talk? Where I am determines my next steps: brush my teeth, refill water, and where I can camp. My favorite places offer electricity and water. There is also a toilet where I can empty my spittoons. The gym is usually my first stop with my toiletry bag. To give my brain a boost, I immediately do my Brain training in the gym. If moving is not necessary, I study or work on my small business. During the day I only drink water or tea to prevent dehydration. If I eat in the morning, that means vomiting all day long! I go shopping around 4 p.m. My large cooler is empty every day. Then I prepare my food in the blender – electricity is a luxury! About 6 p.m. I take my first bite, 2-3 minutes later the vomiting cup is my best friend again. It remains a challenge not to get angry, sad or frustrated. In addition to the symptoms, severe abdominal cramps may occur. After about 5-6 hours of eating and vomiting I’m done with it. Also dragging and emptying all spittoons. The vomiting up will continue for a while. With any luck I’ll be done around midnight. Only when I’m sure I don’t have to spit up anymore can I sleep. The vomiting continues, even with my eyes closed.
Langzaam maar zeker ben Slowly but surely I lost a lot of weight, and now I weigh less than 92 pounds (42 kilos). This puts me in a high-risk medical zone. It’s not just a number on the scale; This weight loss can also have serious consequences for my health and well-being.
Angèle’s Story
… , I’ve reached the point where euthanasia is no longer an option and I’ve found my new path in life. On this path, I want to turn my limitations into my strengths. Because, fortunately, I’m bursting with ideas. I also have plans for my own small businesses, so that I can earn some income at my own pace and rhythm.
I desperately need this money for my daily groceries. Every day, I spend around 78 euros on pure and healthy food, which ultimately provides me with very little nutritional value. And I’m left with very little money. In a few weeks, my bank account will be empty, and I’ll have an extra challenge to survive.
You can see how I cope with all my physical and financial challenges on TV early next year. You will see what my life with Rumination Syndrome is like and how I experience the daily, inevitable vomiting. I can’t say much more about the TV program yet, but I will keep you informed. One viewing tip I can give you for now is the documentary Diagnosis on Netflix – Episode 5 “A Matter of Trust.” Then you’ll also see why tube feeding can even be dangerous for me and is therefore not an option for now
Let’s go back to next year’s TV program for a moment. It clearly shows where my greatest needs lie: living and working from a stable home base. Something I have been missing for seven years, since the forced sale of my house. Since then, I have been hopping from place to place. From borrowed house to parking lot, to the next borrowed house.
I am grateful for all these opportunities to find temporary accommodation. For the warmth and space that many people offer me. People who think of me and lend a helping hand, which is so necessary. Thanks to their help, I am where I am today. Something I would not have dared to dream of years ago.
But I also have to be honest with myself: moving every few weeks or even days takes its toll. Energy. It causes unrest. It requires physical strength that I no longer have. The fact that I have to move all the time means that I don’t have the time and focus to build stability and set up my businesses. And that is exactly what my weakened body needs.
I won’t bore you with all the medical parameters that are in the red, but the fact is that there won’t be any improvement as long as I don’t have a stable home. A place where I don’t have to think about the next move. Where I don’t have to think about basics that aren’t self-evident for me, such as water, electricity, showering, and washing.
In short: I’m looking for a place where my body can find the peace it needs to recharge. Like a battery that gets me through the day, charged by my own little solar panel.
Having my own place would make a world of difference to me. And no, I’m not looking for a house. Because that’s impossible for many people with a normal life, let alone someone like me, with little financial perspective. That’s why I’ve set my sights on a
What does concern me, however, are the finances needed to realize this heartfelt wish, or rather necessity. How can I make my dream of a livable future a reality? I have calculated the costs and was shocked by the amount it would take to build a permanent home where I can regain my strength. To recharge my batteries so I can really get my businesses off the ground. To ensure that the ideas in my head actually pay off.
That is why I am asking for a favor from anyone who can spare it. And above all, I am asking you to share this message. I hope this appeal will generate enough support so that I can say goodbye to my bus, where I am literally weighed down by discomfort every day. I will give you a quick tour to give you an idea…
Watch the movie of my van tour here.
As you can see, there is hardly any space. No physical space. No financial space. And therefore no space to improve my standard of living and health.
That is why I am asking you: will you help me regain some space for a livable future?
Netflix – Rumination Syndrome
Diagnoses – documentary
Release year: 2019.
Dr. Lisa Sanders crowdsources diagnoses for mysterious and rare medical conditions in a documentary series based on her New York Times Magazine column.
Episode 5: A Question of Trust.
Lashay, 17, can’t hold down anything she eats or drinks. But negative interactions with previous doctors leave her family leery of the crowd’s advice.
WATCH
Angèle’s Time line
Rollercoaster of 8 years
Angèle in WATT-Magazine
Read her story during the conversation with Henk van Straten
A THOUGHT HAS ALREADY ARISE. EUTHANASIA.
READ
Text: Henk van Straten – Image: Mirella Sleenhoff
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