Thread by @mai_goya

I have never been one for social media, but this is the first time I wish I could somehow write a tweet that goes viral…

I have a really important thing to say regarding bias towards women in medicine being real and affecting every single one of us.
(Long 🧵…)

@EpilepsyFdn

I don’t like to share personal experiences, but in this case, I will make an exception…

@Dysautonomia @LauraAPace @MetrodoraInst @dys_project @dysclinic @EpilepsyFdn @epilepsysociety

For context, I believe it is important for you to know that I am a Biotechnology Engineer and a Master of Science in Neurobiology. I also have a rare #epilepsy which presents itself as #dysautonomia, which is not common…

I started having focal non motor seizures with impairment of consciousness when I was 8 years old. I was misdiagnosed with Absences/Petit Mal #seizures until I was properly diagnosed at the age of 10 as having focal seizures by an amazing epileptologist.

Since I had been misdiagnosed, the anti-seizure medication (ASM) given to me had not been the correct one which had a huge impact on my health and quality of life. I was not able to be weaned of until I was 18 years old; and was told that #epilepsy could come back.

Four years later, I started feeling unwell. I approached a new -male- neurologist (my former epileptologist had sadly passed away) since I was reminded of my #auras as a child. However, he dismissed my symptoms as being unrelated to #epilepsy and told me I had #dysautonomia.

A tilt-table test was performed and I presented a cardiac pause at minute 3, which was consistent with a diagnosis of #dysautonomia.

I believe for the next part of this experience to make sense, it is important to clarify that despite what many people believe, "Dysautonomia” is NOT a diagnosis per se. It is an umbrella term that encompasses conditions where there is dysfunction in the autonomic nervous system.

Meaning “names and last names” are what is important in the #diagnosis. What specific form of #dysautonomia, and, if possible, its root cause.

Treatment started and I kept getting worse. “It is anxiety”, ” you are depressed”, “it’s stress”, were the only answers that I received from the neurologist.

I then started going with an amazing cardiologist, but started developing symptoms beyond the cardiovascular system.

Years passed and even some family members seemed to fail to take me seriously. They sent me to a cardiologist. HE said it was all in my head and that he would prove it. Anxiety and depression were the diagnoses again and then he proceeded to refer me to an eating disorders clinic

The AMAZING doctor at the eating disorders clinic said that it was not an eating disorder, that it sounded like #epilepsy and SHE referred me to a neurologist. And after 8 years, finally, an EEG was performed and indeed, my epilepsy had come back.

I started consulting an amazing neurologist who performed a battery of tests for differential diagnosis, since, although I my cardiovascular symptoms were better I still wasn’t OK and continued presenting autonomic symptoms; #gastroparesis and GI dysmotility being some of them

I had a baby and became tremendously malnourished during the pregnancy due to gastroparesis. So after having my child I gained some weight. The doctor at the eating disorders clinic told me this was expected and it would take my body about 1.5-2 years to start shedding the weight

During that period of time 2 things happened: I was started on olanzapine due to irretractable nausea, and had a tough couple of months where my GI symptoms were at their worst. I wasn't able to eat much and "complained" about having a tough time. I was hospitalized to recover.

However, despite the fact I was hospitalized frequently, this time they asked my psychiatrist to come see me; I mean, if what I said was true, why was I overweight and, even more so, not losing any weight? SHE told them: she is on olanzapine and has NOT gained any weight…

A clinical nutritionist helped me with diet to manage my condition. SHE explained that all my medication also affected my metabolism which impeded me to lose weight. With her help & reaching the 1.8 year milestone, I started losing weight in a healthy and medically supervised way

However, at another specialist appointment I was asked about my GI symptoms. I told him about how the low residue diet and that I was able to retain more food and had less vomiting. But now that I lost weight I was asked if vomiting coincided with things I craved, like chocolate

One day, while doing some research for #FundacionMaitetxu, (a non-profit my family opened and that aims to facilitate diagnoses of complex autonomic disorders) I read a book and there it was: a diagnosis that could, finally, explain everything!

So, being eternally grateful I, coincidentally, am a neurobiologist and have a background in scientific research, I devoted myself to research.

I approached experts in the field who, thankfully, showed amazing kindness and generosity, and presented my findings to my medical team

I was referred to an amazing epileptologist, who was also recommended by the experts, and he ordered an interictal cerebral PET CT.

And after almost 2 decades it seems I now have a diagnosis…my diagnosis…

So yes, I AM A WOMAN.

But no, I am not exaggerating.

No, it is not all in my head.

No, this is not anxiety or depression.

No, I am not making it up.

No, I am not hysterical…

I HAVE EPILEPSY (albeit a rare type).

However, these experiences encountered are not just my own.

Millions of women are dismissed by physicians and their health concerns are often attributed to anxiety or depression.

I am aware how extremely blessed I am to have the knowledge and the resources to do my own research and advocate for myself.

But it is the exception, not the rule…and it still took me years to get diagnosed.

It is time for a change in the way medicine perceives women. It is imperative to address, recognize and do something about gender bias in medicine.

Thanks for reading me & this huge 🧵

And to all my fellow women please never give up! Keep on fighting and advocate for yourself!

And, a rather important side note…if physicians had ever gone through a mental illness, even if was the only pathology, they would never dare to say that it is *just* depression, *just* anxiety…

These are HORRIBLE monsters and they are real diseases with real pathophisiologies