My advocacy mission

Posted July 1, 2021

Smiling thin and pale woman with wavy brown hair and glasses, with her hoodie opened, showing the Circle with the Zebra of the EDS Society shirt. The shirt is black and the logo is white. The hoodie is maroon. She is in front of a castle with the highest tower with three flags, the Aragon, the Spanish and the European ones. The castle is surrounded by a moat full of grass and bushes. The castle is a fortified medieval palace built during the second half of the 11th century in Mudejar Architecture of Aragon, a World Heritage Site

My name is Montse. I am 43 and I am from Spain. My life has been a constant struggle to live in a body that could neither eat nor exercise, while most doctors lacked empathy. Surrounded by an environment that didn’t believe me, always pushing my body to the limit, I learned to pretend that I was healthy and to decline invitations, while I was in fact not able to attend. Following my Ehlers-Danlos diagnosis in London in 2019, I became a Patient Advocate to raise awareness and educate patients, family, friends, and doctors on how faulty collagen affects the entire body and how the severity of their comorbidities is seriously damaging us every day and can become fatal.

As a child, I already suffered from dysphagia and gastrointestinal problems. I have eczema, atopic skin, dermographism, hives, and food allergies. I have Multiple Chemical Sensitivity and Drug Sensitivity. Since I was a little girl, just after a meal or drink I would end up writhing in pain. It took me hours to finish eating. I was diagnosed with visceroptosis. Eating very small meals limited the amount of energy available to cope with daily activities and study. When starting with my orthodontics I was diagnosed with joint hypermobility – I was told that being a contortionist was an advantage. I used to miss school due to recurrent infections and daily dizziness, vertigo, and fainting.

After my first period, and a chickenpox infection, my condition worsened and I had to quit sports, especially figure skating. The back pain forced me to take several NSAIDs every day until my bowel bled, and to wear a hip-to-neck back brace. My skin was torn with any clothing label, zippers, even sheets. I could only sweat in my hands and feet, preventing my body temperature from regulating, thus suffering constant heat strokes in summer, going into hypothermia, and turning blue in the wintertime. I was diagnosed with Raynaud’s, MTHFR thrombophilia, B12, folic acid, iron, and vitamin D anemias; osteoporosis, Sjogren’s syndrome, non-coeliac gluten sensitivity. I receive monthly B12 shots and iron infusions because I can’t tolerate oral supplements. I am being checked for GI motility and compression syndromes due to craniocervical instability and migraine with basilar hemiplegic aura.

In university, I experienced strange syncopes which were diagnosed as panic attacks, but it was actually the dysautonomia that skyrocketed causing me dystonia and myoclonus. They blamed it on anxiety and depression and medicated me with anxiolytics and antidepressants. I had to drop out of university for a year, but finally, I managed to return to college and graduate.

A keystone of my story is my mother. She had early menopause and was bedridden with chronic pain and random tachycardias. She was diagnosed with fibromyalgia and doctors accused her of being neurotic and faking. Until she worsened and a neurologist ordered a biopsy that showed neurogenic muscle atrophy. She died of ALS two years later. I feel so sad witnessing how women are diagnosed with psychiatric disorders as the first option without ruling out a physical cause and without further investigation. This gender bias was the subject of my pre-doctoral master’s thesis on Women’s Studies. Since medicine has neither studied the feminine body nor included it in clinical trials because of hormonal changes, women are being treated according to male healthcare standards. The risk of iatrogenesis is high and real.

It was while living in London that I was diagnosed with Ehlers-Danlos, confirmed by genetics (a col5 mutation), and POTS, as a result of emergency admission in 2019 due to pulmonary rupture and pleural effusion. A lifetime of debilitating strange symptoms had finally a physical explanation. I will always be grateful to my doctors in London for their humanity and empathy. As a member of EDS and POTS charities in the UK and USA, I educated myself and spread knowledge about my syndromes. Finally, my environment understood and believed me. Here lies the importance of diagnosis and medical support – prevent irreversible injuries and provide with quality of life without ending up abandoned and condemned to social exclusion.

Now back in Spain, my two wonderful neurologists fully support me: “You’re not alone on your journey”. Doctor and patient, we are a team. We must change the medical mindset that prevents us from being believed when we ask for help. Especially when it deals with a physical inability for feeding. Lack of information can be deadly. Doctors often identify EDS as just hypermobility, they don’t relate it to the gastrointestinal tract and label us all as walking eating disorders. We don’t have any psychiatric disorder, but a body that can’t function properly. We want to eat and we want to live.

That’s my mission as Advocate, to report the extent to which this syndrome affects the whole body so that we can get proper help.

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