Karina Sturm (Director, Producer, Editor)
I am a 33-year-old former medical assistant and lab technician and now journalism student from Germany who lives in San Francisco. My journey with chronic illness started when I was 24 years old and suddenly developed severe neurological symptoms. I couldn’t feel my arms anymore, wasn’t able to walk or talk properly. For the following four years, I have seen many specialists in Germany and was misdiagnosed several times – mainly with psychological diagnoses. In 2014, I decided to cross borders in search of the real reason for my symptoms and flew to the US. I underwent some alternative treatments which failed and was sent to a neurosurgeon in Maryland who, by coincidence, was one of a few specialists for Ehlers-Danlos syndrome. Finally, I was diagnosed with this connective tissue disorder, and many comorbid conditions, for example, cervical spine instabilities, dysautonomia, mast cell activation, besides others.
Since then, my life has been defined by raising awareness, helping other EDS patients, and finding a new purpose in life. I had to give up my job as a research associate due to my disabilities and all of a sudden, many things that had been easy in the past, became a challenge. I found a new passion in writing and became a freelance writer and journalist.
We Are Visible guides you through my life with EDS and many other related conditions, and while showing you all its challenges and successes, you will get to know a handful of amazing people of all ages who all live with Ehlers-Danlos syndrome around the world. You will find out how their lives differ from mine and how they remain positive and hopeful.
Ashley & Sophia
Ashley is a mom of two, and they all have Ehlers-Danlos syndrome. In her Blog, ”The Malleable Mom,” she talks about living with Ehlers-Danlos syndrome as a family in Maryland.
She loves colorful glasses and tattoos, and her favorite coping mechanism is swearing.
As a family, they have more braces than most rehabilitation shops. They love to laugh together but also cry as a team sometimes – especially if one of the kids is suffering. They support each other and understand if a family member cannot cook dinner and has to stay in bed.
The Durable Daughter, how Ashley calls her daughter Sophia, is a brilliant kid. During an interview, she wanted to show me her braces, got up in a hurry, and collapsed just seconds later. She has postural orthostatic tachycardia syndrome (POTS) – a common condition for EDS patients – and sometimes forgets that she cannot get up as quickly as other children her age. When she finishes high school in three years, she wants to become a vet for which she already studied most of the textbooks. To cope with EDS, she draws intricate portraits, as well as plays three different instruments.
Denise is a German woman in her late 40s, but you wouldn’t believe this. She always says she is a 30-year-old in the body of an 80-year-old. Denise has been misdiagnosed for decades, and one of the medications she received caused psychotic symptoms. Her experiences with medical professionals traumatized her so much that she had lost the trust in her doctors for a long time. Now, she works hard to gain back that trust. Not long before we started shooting, she was found to have cancer. So she had an additional enemy to fight, which she did differently compared to non-chronically ill cancer patients. Denise passed away shortly after I left her, and this film is dedicated to her.
Jennifer is an author, blogger, and artist who lived in many countries, including South Africa, Australia, America, besides others and is now residing in Malta. She shows how hard it is to get a continuation of care if you move to a new country with a rare condition starting all over again every time. Additionally, Jen is a part-time crutches- and wheelchair-user and explains what it means to use a wheelchair as someone who is not paralyzed.
Debbie, Lucas & Lotte
Debbie lives in the Netherlands with her husband and two children. She and both of her kids have Ehlers-Danlos syndrome. She says about herself that she is the manager of all their health-related issues. So when she isn’t planning doctors appointments, she drives her children to horse riding, swimming, physical therapy, and whatever other appointments they have. She is an active advocate for the community and gives speeches at conferences while living with severe consequences of EDS herself. Her children have a hard time at school because due to their health issues, they cannot take part in certain activities.
Cindy and Jade
Cindy and Jade live in Belgium. Jade is a 14-year-old living with Ehlers-Danlos syndrome, arthritis, and osteoporosis, and severe pain. Sometimes, she is too sick to get up in the morning, which is why she was transferred to a school for intellectually disabled students. At her previous school, she couldn’t keep up because of her physical limitations; in her recent school, she is underwhelmed by the program. We planned to film her at school, at a farm that helps her to cope with the pain, and at her physical therapist’s office, but plans often don’t work out when you live with a chronic condition like EDS, and Jade was admitted to the hospital shortly before my arrival due to complications related to EDS. So we filmed her during a painful treatment in hospital, which couldn’t be more accurate to depict an EDSers life.
Jojo is a mom of five children. She and four of her children have EDS. When she shared a video of her daughter’s bendy joints on YouTube at the end of 2012, she was accused of child abuse (FII), and 12 months of investigation followed. Jojo was cleared of all accusations in 2014, and since then she has been raising awareness for these common issues in the UK. Even though her case was closed and her daughter has been diagnosed with EDS besides other illnesses, years later, her daughter was referred to social services again. Every time she goes to a hospital, doctors have prejudices against her, because the first page in her documents is the letter that she was investigated for FII.
We Are Visible!