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Autoimmune Disease Research

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At 25, as I was preparing to finish my linguistic Master's degree at the top of my class, I was supposed to get ready for a new, exciting life as a young professional. Little did I know that my life would take an unexpected turn and that I was losing my health forever. In the midst of my final exams, I was diagnosed with a severe form of Ulcerative colitis, a chronic illness that would gradually strip away all of my plans and many of my dreams over the years that followed. What ensued was nothing short of a nightmare. Things got very traumatic, painful, humiliating, and scary.

Over 15 years and many complications later, I’ve reached a place where I’m able to focus on a new dream: helping to find the cure that we desperately need. I’m fortunate that I have the support of my husband and two daughters, and that I am able to manage my condition well enough that I can confidently go into the coursework knowing how demanding it will be. I want something better than “able to manage”, though. And I want better for all the other patients who haven’t even got that today.

I recently published a book about a diet that's been helpful to me, a book other patients have found immensely valuable.


(This is a photo of me during a presentation of my book.)

My ultimate goal, however, is to make an even more tangible difference in the lives of patients with autoimmune diseases, especially with regard to inflammatory bowel disease (IBD), the umbrella term for Crohn's disease and Ulcerative colitis. That's why I have enrolled in a university program, pursuing a Bachelor of Science. I am determined to follow that degree up with a Master's and ultimately go into medical research to work on an actual cure for these poorly understood diseases. 

The Search for a Cure

Autoimmune diseases (including Crohn's disease, Multiple Sclerosis, Hashimoto's, Rheumatoid Arthritis, Psoriasis, and many others) are incredibly common and cause an enormous amount of pain and even deaths as there is no cure and no real understanding of their cause. Available treatments often come with severe risks and side effects, and they often stop working after some time. Many people with IBD eventually have to undergo multiple surgeries which are fraught with risks of their own. 

Though much progress has been made, a cure remains elusive. That's at least in part due to one recurrent pattern that ails relevant research, which is that all these diseases are looked at separately, as there is no medical discipline that focuses on autoimmune diseases as a category. Instead, each medical discipline is devoted to a specific organ system (cardiology, neurology, gastroenterology, etc.). But autoimmune diseases can affect all of these systems! Meanwhile, much of current research points to a common cause of autoimmune diseases, and to it being located in the gut. This is exactly the area I am interested in.

Here's where my need for financial support comes in. Thanks to my excellent grades and previous accomplishments, I have luckily been admitted to the program. Another fortunate factor is that University tuition in Germany is free. However, I struggle with the cost of living for myself and my family because with two small children, it is impossible for me to take on a job in addition to a very rigorous, demanding, and time-consuming course of study. My husband makes enough money to cover more than half of that cost, but without the income I used to contribute as an author and, before that, as a free-lance translator, we can't make ends meet: we end up about 600 euros short each month.

Falling Through the Cracks of the Educational System

It turns out I'm not eligible for the normal government-run student assistance / student loan (BAföG) because of my previous University degree. I have exhausted all the options in researching scholarships and applying for them - unfortunately, to no avail. It turns out that one of two things always ends up precluding me. It's either my age (I'm 41) or, again, the fact that I've already completed a University degree. 

If I can get the next 6 years covered, that would get me well on the road to my Master's degree. At that point my children will be older and it should be feasible for me to take on a part-time job in a science-related field to help feed and clothe my family.

I already completed one course with an A+ last semester (plant biology) and am currently taking two courses (chemistry and physics). However, I'm currently only capable of doing so by piling up debt. We are already far behind on paying back my husband's student loan and have no savings left. That's why I'm asking for your help. 

I can't begin to describe what it would mean to me to keep pursuing this goal. Besides my family, this vision is what gives me purpose in life. I want to make a difference. I want to improve people's quality of life so others don't have to suffer the way I have (or much worse, as some of my fellow patients have). I could even save a few lives along the way if I'm  given this chance.


(This photo shows what I look like when I'm taking prednisone, the drug prescribed to alleviate the life-threatening symptoms of a flare-up.)

Time is of the essence, though. I have just been turned down for another scholarship I had invested a lot of hope into, so this initiative is my last resort. I have to make a decision within the next three months as to whether I should continue or if I should throw in the towel and start earning money again instead. 

A Global Epidemic

Let me conclude with some stats taken from the American Autoimmune-Related Diseases Assocation (AARDA):
The US National Institutes of Health estimate up to 23.5 million Americans have an AD. (In comparison, cancer affects up to 9 million and heart disease up to 22 million.) The AARDA even claims that as many as 50 million Americans probably suffer from autoimmune disease because the NIH numbers only include 24 diseases for which good epidemiology studies were available. 

Researchers have identified 80-100 different autoimmune diseases and suspect at least 40 additional diseases of having an autoimmune basis. These diseases are chronic and can be life-threatening.

The incidence of autoimmune diseases is rising steeply and steadily. According to the University of Alabama Dept. of Anthropology, a rising incidence of Crohn's disease, for example, in both adults and children has been observed in recent years, with some studies suggesting a ten-fold to 20-fold increase in children over three decades.

This is a global epidemic with far-reaching consequences.  If you want to help me do something about it, please consider a donation.

I will post updates here and on my blog to keep you posted about my progress. 

Every cent counts, and it will mean so much. Even if you are currently unable to donate any money, you can still help by spreading the word. Please let your friends know about my endeavor and share this page with anyone you know.

Thank you!

For more information, visit
https://www.aarda.org
https://anthropology.ua.edu/blogs/ant475/2014/10/25/a-new-epidemic-crohns-disease-among-young-children-globally/

My blog is at www.urgesundheit.de 

Organizer

Heidrun Schaller
Organizer
Leipzig

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