Getting diagnosed and living with a chronic illness, such as Ehlers-Danlos Syndrome (EDS) or Gastroparesis, is often a long winding road filled with uncertainties and misconceptions. Read about Anna Hörster’s lifelong EDS journey and how she became a successful owner of a feeding tube accessories shop and a social media inspiration for others in similar situations.
The path from first experiencing EDS symptoms to receiving a clinical diagnosis can feel like navigating a labyrinth. Along the way, patients can receive a misdiagnosis, a growing list of comorbidities, and an extensive number of tests. On average, it can take around ten years for patients to receive a correct chronic illness diagnosis.
Here we share the story of Anna Hörster. Among her many roles, Anna is a social media content creator, a small business owner, a member of our M3 panel, and an affiliate of our patient community who lives with a feeding tube; she’s also a genuinely uplifting individual. Her serene and inviting demeanour undoubtedly explains her rising popularity on platforms like TikTok and Instagram, where she has amassed over 21.4k followers.
Her lifelong journey to her diagnosis of EDS, gastroparesis, and the scarcity of information about her conditions have inspired her to create an online community, social media content, and feeding tube products for others in similar situations.
What is Ehlers-Danlos Syndrome (EDS)?
EDS is not a single disorder, but rather a collection of related conditions, each with its own set of characteristics and complications. There are currently thirteen recognised types of EDS, each classified based on specific genetic causes and clinical features. The symptoms can be varied and widespread, making it challenging for even the most experienced clinicians to diagnose. Common EDS symptoms include hypermobile joints, stretchy skin, and a tendency to bruise easily.
The Overlap between EDS and Gastroparesis
Gastroparesis, a condition that slows or stops the movement of food from the stomach to the small intestine, often coexists with EDS. This can lead to nausea, vomiting, and severe stomach pain. Dealing with both conditions is particularly challenging.
Anna Experienced EDS symptoms at age 3
When I was 3 years old, I was able to dislocate my shoulders. As a child it was just a fun game to me, in school I liked to show everyone what fun tricks I could do. My parents were of course concerned and took me to the paediatrician who was the first one who mentioned Ehlers Danlos Syndrome. The paediatrician mentioned the symptoms I was experiencing could indicate this condition, however as no other symptoms were present at the time it was not an official diagnosis.
Then when I was 5 years old, my mother took me to an EDS specialists’ clinic, and they were not able to diagnose me with EDS either. Instead, they diagnosed me with hypermobility spectrum disorder. It is similar, however, it was never fully explained to me. For a long time, I thought I was only hyper mobile and nothing more and nothing too serious.
At the age of 8 I began to have terrible stomach problems and after seeing many doctors I was diagnosed with fructose intolerance. My diet changed to exclude things with fructose, however, I still had no relief. After additional testing there were no immediate answers. I resolved to the fact I would have stomach problems for the rest of my life.
Growing Up, Anna Went from One Misdiagnosis to Another
During a routine checkup at the age of 13, my bloodwork raised some concerns for the doctor, leading to a recommendation for an endoscopy. Based on my endoscopy results, my doctor diagnosed me with coeliac disease, prompting me to adopt a strict gluten-free diet. My symptoms eased, and felt well until 18, until I decided to try reintroducing gluten. To my surprise, I tolerated gluten and continued consuming it for two years.
My diagnosis of coeliac disease required a treatment regimen of checking in with the gastroenterologist every two years. So, at the age of 20 I returned for my scheduled check-in and had some routine bloodwork and an endoscopy done. The tests confirmed my small bowel looked to be free of coeliac disease. Which was medically not explainable. The specialist was astonished but had no immediate answers or explanation for how this was possible. The medical mystery persisted.
After a while, I started to have gastrointestinal issues again, yet there was still no sign of coeliac disease on any test results. Becoming my own advocate, I decided to go through all the folders of records kept over the years of appointments with various healthcare professionals I had seen for different issues, which I and my family thought were all unrelated to each other. From back pain at age 14, which was so bad that I went to physical rehabilitation for relief, to all the paediatrician check-ins and gastroenterology appointments.
Eventually, I came across the words: Ehlers-Danlos Syndrome. It was the suspicion noted in my records by the paediatrician I had visited so many years ago, at the age of 3. I started researching myself about the symptoms of this disease and began to realise this was entirely possible. Many of the EDS symptoms described my experiences perfectly.
Diagnosed with Hypermobile EDS at Age 21
I sought treatment at the same clinic my parents took me to when I was 3 years old. At age 21, I was finally diagnosed by the same doctor who had suspected the EDS diagnosis nearly two decades earlier.
My parents have a lot of trust in the doctors as most people do. When medical professionals offer their opinions, patients often place their trust in them. In my family, I am the only one with this condition, which poses a barrier to receiving a diagnosis.
Being the first in the family with a condition means there is no clear genetic cause to point to. Consequently, healthcare professionals tend to rule out more common conditions before diagnosing a genetic condition in someone without a documented predisposition.
I was diagnosed with EDS largely because of the comorbidities I experienced. I conducted my own research, advocated for myself, and collaborated with healthcare professionals to piece together the full picture of my condition. I went to a genetic counsellor who did bloodwork and did not find any other markers connected to EDS directly, but with all the other comorbidities I described they advised there is no other explanation.
I was also told I do have certain genetic markers that are still being researched as to their relation to EDS. Because of the comorbidities and these suspicions from the genetic counsellor specialist I have received a clinical diagnosis of EDS.
Gastroparesis and Finding the Right Feeding Tube
Due to the clinical diagnosis, I was advised by healthcare professionals to investigate and get a formal diagnosis of my comorbidities. My stomach problems were my biggest concern, so I went to the gastroenterologist informing them of my EDS diagnosis. They sent me for additional testing. One of the tests done was a gastric emptying test. This test involves eating small portions of food that include a tracer which allowed the radiologist to track how long it took my body to break down the food.
The process normally takes someone with a healthy digestive tract 1-2 hours to complete. However, after two hours, nothing had been digested in me. This led to my diagnosis of gastroparesis.
I was referred to another specialist who could not find a treatment for my condition. Subsequently, I was directed to a clinic in Hamburg with gastro specialists. They diagnosed my small bowel as paralysed. My new specialists decided a feeding tube was the best solution.
The first feeding tube I received was a nasogastric (NG) tube. After a week and a half with minimal relief, the specialist opted for a smaller tube inserted directly into my stomach. This tube was replaced several times until they settled on a G-tube. Five months later, an additional tube was placed in my small bowel. Currently, I have two feeding tubes.
During my hospital stay, when I received my first feeding tube, I started researching online. I didn’t know anyone with a feeding tube or where to find information. I discovered British, American, and Canadian content creators with gastroparesis who sold feeding tube accessories. However, I could only find one shop that sold them in Germany.
I have always been passionate about sewing and am self-taught. During a hospital stay, my roommate and I, both receiving feeding tubes, shared the frustration of sourcing supplies. I promised her, “When I get home, I’ll sew tube sets for us, so we don’t have to buy them from around the world.” Thus, my Etsy shop, Alles in Schoen Tubie, was born.
Anna Starts a Feeding Tube Business and Builds a Community
I taught myself to sew accessories for tube feeding because there were no readily available online instructions. Later, I started my social media account to promote my Etsy shop. I would post videos on Instagram to show the products and videos such as how to dress with a feeding tube. My best friend encouraged me to begin creating TikTok videos.
I had no experience on the platform. I began with including various types of instructional videos related to feeding tubes. The popularity of these videos far exceeded that of other content, leading me to conclude that the community has a strong demand for more explanatory or instructional resources.
Although I was reluctant to start the videos, I am so grateful that I went for it. The people who reach out with questions are so grateful for the connection and I so am I.
My Etsy shop has grown, and I know it is because there is a lack of resources in Germany for patients with feeding tubes. I am happy to make these connections with people. I am happy to share the positivity of this community.
Some days I do not feel well, some days I am busy with life and schoolwork, but I still make the effort to connect with people. Connecting with people who share similar experiences is incredibly fulfilling. Developing genuine friendships with those facing the same challenges makes you feel less alone, and it’s truly amazing.
How to Contribute to the Feeding Tube Community Through Market Research with M3
Anna’s inspiring journey exemplifies resilience, patience, the importance of self-advocacy, and community. If you’re battling chronic conditions, know that you are not alone. Anna’s insights into life as a patient using feeding tubes highlights just one aspect of the broader patient experience.
Our year-long survey for individuals living with a feeding tube in Germany is still open for new panel members. If you have experience with a feeding tube or chronic illness, join our panel to share your insights and help shape future therapies.
Here’s how you can contribute:
Sign up as an M3 panel member here
Participate in paid market research studies focusing on your condition
Get paid via the M3 Wallet
Your experiences and opinions are valuable to enhance treatments and patient care worldwide. Read more about our Patient Community and our ongoing feeding tube surveys here.
If you want to share your personal story with us and help research forward by participating in paid market research, make sure to register for the M3 Global Research
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