I recently heard a young person (I know; it’s crazy when we stop fitting in this category) use the phrase “doing the most” to describe a person going over the top–and they didn’t mean it in a good way. It’s a little funny when you think about it, though–“doing the most” should really be a good thing. However, I think as EDS and HSD patients, we treat ourselves much the same way when it comes to self-advocacy with doctors and it probably starts with the fact that so many medical professionals treat us exactly the same way. Here’s what I mean–when we push for answers and help by, in a literal sense doing the most, we are seen as pushy hypochondriacs or people who have done a few too many Google searches, maybe people who have self-diagnosed, maybe people whose tests up to now look “normal” and therefore nothing is wrong except what’s in our heads, we judge ourselves just like those young people. We see ourselves with that same negative connotation. The self-degradation sets in like POTS in summer weather with no Gatorade.

Over time, this degradation contributes to medical trauma (medical trauma ultimately the responsibility of a system in which so much advocacy should not be necessary but that’s another topic for another day). It drives us to stop seeking answers and advocating. It pushes us to isolate and over time, we may even begin to believe we are crazy. I heard once the average time of diagnosis from onset of symptoms for an EDS patient was over 22 years (I can’t cite a source here and this has likely changed; don’t come for me). When you think about what 22 years looks like–if that period of time were a human being, they could graduate college. That is a college graduate worth of years feeling crazy and begging for answers from any number of medical professionals who make you feel even more like a crazy person. AND, that’s only on average. Imagine you are the outlier. You are the person who is in your 50’s at time of diagnosis having spend decades collecting traumatic experiences like I collect Taylor Swift merchandise. Trauma doesn’t just change the mind. Trauma changes the body. Society fails to see medical trauma as real trauma so often and we deserve better.

I suppose I have begun to ramble yet again and missed the point entirely, so I’m going to attempt to do something helpful rather than continue down a negative path.  I was fortunate to be surrounded by people who made sure I didn’t stop pushing no matter how discouraged I got. They didn’t let me give up even when I was told for the 857th time if I lost weight I would feel better, even when that turned into an eating disorder and I still didn’t feel any better, even when another orthopedic doctor told me they couldn’t explain why surgeries either needed to be done or had failed. In this way, I learned quickly how to “do the most.” What that meant was when one doctor didn’t have an answer, they weren’t the right doctor–not that nothing was wrong. What that meant was when a doctor spoke to me in a way that had me sobbing in the car on the way home, we called and filed a complaint with the system, even if all that did was put some note in some file somewhere. What that meant was making a list before every appointment of what needed to be done and if it didn’t happen, we moved on. What that meant was making sure when I was ready to give up, nobody else around me was.

In reality, I’m not that good at this myself. I’m a “do as I say” person and I can advocate fiercely for all of you. (I’ll go to the doctor with you if you need.) I think how I have learned to “do the most” is by bringing my husband who has learned the means by which to get me the help I need. He won’t leave a doctor’s office until he asks every question. He keeps detailed records of all my medical bills, every visit, procedure, and prescription. He reminds me all the time that I am not a bother to these professionals AND that even if I am, it is their responsibility to accept that bother. He has helped me exercise when I have needed it and made sure I rest when I would otherwise push my body too far. He will run to get me electrolytes in a POTS episode, made sure I refill my medications, and picked them up whenever necessary. He helped me get my emotional support animal and manages the pet insurance for them as well.

Sometimes, the best way to advocate for ourselves is to accept there are times when we are simply too weary to do so. Sometimes, we do the most by recognizing others love us on our medical battlefields when that trauma causes us to freeze up. All the best intentions and the most lists won’t help when we get flashbacks on every exam table. Wars are not won by a single soldier. You don’t need to win by yourself either and we are all here to back you up.

I have also made progress in my ability to do the most by recognizing my need for mental health assistance. Let me be clear–this is not because my pain or disease are imaginary. This is because living with my pain, disease, and other things in my life is simply too much to handle without that help. I will never forget the psychiatrist to whom I said I had heard my pain was in my head for so long I was convinced it was. He looked me in the eye and said, “of course it is; that’s where we feel pain.” It was this moment of profound insight. He took this sentence I said and changed its meaning in a single sentence. From that moment, whenever I feel my pain is in my head because of a flashback, I giggle a bit and tell myself “of course it is.” I go to therapy every week and I love my therapist. When I saw one I didn’t love, I moved on. My therapist has researched EDS and has another patient with it as well. This has given her immense insight and not only makes her better with me but she says it makes her a better therapist all around. I agree. Don’t be afraid to ask for this professional help either.

I guess what I’m saying at the end of the day–no matter what any young person says, “doing the most” in this part of your life is not only helpful, it is necessary. You deserve the best treatment, the right diagnoses, and a community of people around you who understand and support you. I hope you will use this community to help you find professionals who make doing the most require less of your energy, less exhaustion, and less frustration–and I hope as you have read this, you know even more that you are not alone.

My Advocate

Pain Management for EDS – Resources

    • CME Accredited Article on Hypermobility Disorders
    • After participating in this CME/CNE activity, the provider should be better able to:
      • Describe the various types of hypermobility.
      • Identify signs and symptoms of Hypermobility Spectrum Disorders.
      • Develop treatment plans for patients with hypermobility disorders that address their specific and unique needs.

Karina, a woman with short, brown hair and a pink flower in her hair smiles slightly. She is wearing big, black glasses and a red jacket

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose. 

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did! 

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and therefore  see it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people. 

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way. 

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.


Pencil like drawings of all the faces of the main contributors of We Are Visible.

We Are Visible – Open Your Eyes


Details about the Film


“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

We Are Visible

SCREENINGS of the film:

In January, there will be screenings in Rhode Island, Colorado, and a larger one in Orange, California. If you want to join any of those screenings, have a look at the Event page:


69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

More about the filmmaker: 


Trailer 1

Trailer 2

Tailer 3


Find out more:


Official Website:



Flyer for 'We Are Visible' featuring black and white pictures of the main contributors, all women and two children, as well as film award laurels, and the synopsis of the film.

We Are Visible – A film about people living with Ehlers-Danlos syndrome

Introduction to mast cells and MCAS

Hey everyone, it’s Sam again! I reached out to you guys via the Facebook community a few weeks ago and got a few requests for information on mast cells and MCAS. I personally don’t have MCAS, so it’s not something I research as intently, but I LOVE immunology and thought this would be a really fun thing to talk about.

Immunology can be a scary subject, even for biologists. It’s very detail-oriented, there are a LOT of things going on, and the scientific community still doesn’t understand a lot about how the players in the immune system work. We do know that the immune system interacts with other parts of the body, like the nervous system (neuroimmunology recently crossed my radar and I’m enthralled!), to cause some interesting effects, so immunology is becoming a hotter and hotter topic for research.

The big player in MCAS is, as the name implies, the mast cell. To understand MCAS, we need to break down what mast cells are and what they do.

These guys are mast cells:

They have a bunch of receptors on their cell surface that let them talk to other cells in the body and receive input from both other cells and the environment they’re in. All those dark purple circles you see in the image above are called granules. Many different cell types have granules in them, and they can hold different types of chemicals (often called cytokines or chemokines) depending on what the cell needs to do. Mast cells usually have granules full of histamine, but they can also hold enzymes that chop up proteins (proteases), neurotransmitters like serotonin, and a bunch of other types of chemical messengers and enzymes. Histamine is the compound we usually talk about when discussing mast cells and allergy, and it makes a lot of different things happen depending on where it’s released.

So….what exactly does histamine do? There are 4 main histamine receptors in the body, and when they’re activated, each one can cause different things to happen. Some are more common in different parts of the body, which is why histamine can trigger different kinds of reactions. From typical seasonal allergy-type reactions or skin irritation to GI symptoms, to nervous system effects like nausea and vertigo, and even anaphylaxis, histamine can trigger a wide range of symptoms which is why MCAS can be difficult to diagnose. Many signs can be relatively benign or nonspecific, but when typical allergy testing comes up negative, it may be time to investigate MCAS.

Keep in mind that the other chemicals mast cells release can cause other things to happen, too. It’s not all about histamine!

So how are mast cells activated? Mast cells have cell surface receptors that can bind allergens, specific classes of antibodies, and signals sent out by other immune cells. When activated, mast cells release their granules, which then break open and release their contents into the local environment and trigger other events to happen.

It isn’t fully understood why mast cells don’t behave normally in MCAS. It’s important to note that MCAS is not the same as mastocytosis, which is characterized by an abnormally high number of mast cells; in mast cell activation syndrome, mast cells are activated too easily and are releasing their contents in situations they typically wouldn’t. Some environmental triggers can stimulate mast cells, like excessive heat or cold, sunlight, mechanical irritation, and chemicals or products on skin. There’s an observed correlation between MCAS, POTS, and EDS that isn’t fully understood.

MCAS is a very involved disorder, and it would take significantly more than just one post to do it justice. Hopefully this quick overview was helpful! Don’t hesitate to reach out to me via the EDS, Wisconsin Inc. contact page, or on the EDS & Joint Hypermobility Wisconsin Facebook page if you have anything in particular you’d like for me to discuss in detail.

*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with the information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


  • Mast cell secretory granules: armed for battle. Wernersson S, Pejler G. 2014. Nature Reviews Immunology. 14: 478-494.
  • Mast cell activation syndrome: a review. Frieri M, Patel R, Celestin J. 2012. Current Allergy and Asthma Reports. 13(1): 27-32.
  • Mast cell activation syndromes. Akin C. 2017. Allergy and Clinical Immunology. 140(2): 349-355.
  • Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia – (I didn’t actually watch this, but thought it would be a great resource!)


Have you heard the news?

Prevention Genetics and Advanced Tele-Genetic Counseling (ATGC) joined us at our latest event, Meagan’s Walk for EDS Awareness and Suicide Prevention and shared in announcing our amazing news.

EDS Wisconsin, Inc. has worked to make genetic testing more accessible, through telephone counseling and self-administered testing.  This can eliminate the long wait, often years, many people face trying to get an appointment and testing with a geneticist.

In honor of the latest news, we’ve created a resource page specifically for genetics resources that we’ll be updating as more information becomes available.

Check it out, share, and don’t forget to print your referral form below!


Like, share, and comment!

We can’t wait to hear your reactions!

Together we are stronger!