Having EDS in VenezuelaPosted June 1, 2021
My name is Maria Fernanda. Some call me Marifer or Mafer. In May 2021, I turned 23 years old and I am from Venezuela. I work in graphic design and I teach English. I love art, music, cooking, and helping others, especially children. But not everything is right….
I am a medical zebra. I have two rare diseases: multisystemic atrophy or Shy Drager syndrome and Ehlers Danlos syndrome (EDS), which has caused me many comorbidities (secondary diseases), such as postural orthostatic tachycardia syndrome (POTS).
Why a zebra? Medical students are taught this phrase: “When you hear hoofbeats, think horses, not zebras”, which means that when diagnosing they should think of common, not rare, diseases.
As a child, I already had many symptoms, but I never thought they were a sign of something serious. I thought it was normal for the joints to “come out” of their place and hurt… Until I realized that this did not happen to others.
My diagnosis took 20 years to arrive. It was until I began to deteriorate to the point of near-death several times that I learned that this had Ehlers Danlos syndrome.
For years I was discriminated against for not looking at the stereotype of someone sick.
This condition has affected all my systems. I have craniocervical instability, making it difficult for me to hold my head up, and my brain continually compresses my spinal cord. I probably have a Chiari malformation. This affects my nervous system and causes me to pass out, seizures, shortness of breath, respiratory issues, and a lot of pain. To diagnose it, it is necessary an upright magnetic resonance, which doesn’t exist in my country. For now, I try to use a neck brace to avoid a hypoxic crisis, that is, low oxygen levels in my brain.
Not only my neck is unstable, but my entire skeleton, so any activity, no matter how minimal, causes me pain, fatigue, tremors, and numbness. Even writing, walking, cooking, eating, working I have to do it in alternative ways to be productive and fit in because even if you can’t, you have to.
My cardiovascular system fails a lot: it produces arrhythmias 24 hours a day, low blood pressure, fainting, fatigue, falls. My skin is fragile and susceptible to injury, bruising, and healing problems. My eyesight is impaired as well as the rest of my senses.
My digestive system is a mess. My diet is difficult to do because I can’t eat things that other people consume. Many foods hurt me, and paying for a special diet is impossible. I have chronic gastritis, digestive bleeding, constipation, and my transit is exaggeratedly slow, to the point of spending 21 days without evacuation.
My immune system is also affected. My body constantly overreacts to substances it shouldn’t —like medications—, which can lead me to anaphylactic reactions.
I can write a whole book on my mental health. I summarize it in severe depression, anxiety, obsessive-compulsive disorder, emotional instability, and high sensitivity.
But there is something else that affects me even more: the misunderstanding of people, especially doctors, who assume that everything is psychiatric or idiopathic. In my case, this worse and delayed my diagnosis and treatment. If they had treated me effectively when it all started, I wouldn’t be like this.
To understand what was happening to me, I had to do many things, such as translating and interpreting information in English —because there is very little in my language—, fill out 20-page questionnaires to save time in consultations, and have virtual appointments with doctors of other countries because in mine there are no specialists or resources.
In my country, it is not easy to access treatment, especially when, like me, you don’t have resources. Health insurance doesn’t cover these types of diseases even though the treatments are more expensive than those for other conditions. In my case, the necessary investment exceeds $ 15,000 dollars, which I don’t have.
I am in a very difficult situation because I can’t access the multiple treatments that I need to improve my quality of life. I can’t afford so many supplements, medications for more than 70 symptoms, therapies, studies, appointments, diets, etc. I can’t even walk anymore, I am in a wheelchair, which I can’t stand for more than two hours because my body collapses.
I can’t do any of the things I love anymore. Although it is what I want the most, my body doesn’t follow my orders, it doesn’t do what I want. It is not that I don’t want to do it, simply I can’t. To go out I have to think twice because that means spending three or four days in bed recharging energy. Pain and my visual problems make that I can’t work anymore. I look for alternatives daily; I guess that’s how I’ve stayed alive.
Getting a full diagnosis is expensive. Studies are not done in almost any country. In the world, there are only five doctors specialized in craniocervical instability who, in addition, charge amounts beyond the reach of anyone.
Breathing and controlling pain, sleep, and temperature becomes more difficult every day. There are things that happen to me for which I have no answer.
Many people don’t believe this is real, despite all the evidence. This invalidation includes my family, friends, and doctors, which affects my mental health. Nobody listens to me, nobody cares. They always tell me that everything is in my head, they ask me to stop predisposing myself, to forget it.
On the other hand, there is no information or interest in generating it, which leaves us alone and adrift. However, this has led many, like me, to be “active patients” or “expert patients.”
If we ignore ourselves, if we don’t become experts in our condition, we are in high danger. If we don’t solve our doubts or seek information, no one else will. That is why I congratulate the parents who do learn to help their children when they suffer from a rare disease, who fight for them when they are still young, not when they have suffered so much.
We are a complex picture, a puzzle of more than a thousand pieces turned upside down, that you don’t know how to begin to put it together.
There are countless symptoms and things that I don’t talk about. If necessary, I do it because there is not much information, and less in Spanish. I accept curiosity, I accept being asked, I agree to explain the reason for certain things because I believe that this condition is more bearable when the world is more comprehensive.
I want to live, but it is getting harder. This is progressing faster every time. I need to treat myself so, at least, the deterioration stops. I want to be strong and aspire to a future, stop just resisting and surviving and start living. I want to get out of the uncertainty, the danger, and the misunderstanding to be able to continue telling my story, to help those who are going through situations like this. Only those of us who have been through moments like this know how comforting it is to know that you are not the only one.
My dream is that, even though there is not so much information, there is empathy towards people with invisible illnesses —those rare conditions that nobody takes into account— that we can see a light at the end of the tunnel, that we can fight the symptoms… That, although we are zebras among horses, we can be accepted, understood, and supported.
Many people may have dreams such as traveling the world, being famous, millionaires, etc. In my case, I just want to have health, to have life.
I wish all the zebras who are walking this path full of unjust and painful things, be heard.
Let’s help each other make this visible. If you are also a zebra, don’t be quiet. The time has come to show our stripes. We may be fragile, but we are also indestructible, invincible, and unstoppable. Together we are stronger.
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