Help with school& getting help for thE EDS disease

Hi everyone ! 
My name is michaela and now on September 13th, I’ll be turning 31… but for some
Reason I feel more like 131 ( wish it was a Corny joke … but unfortunately it’s not ) that reason … that reason is due to I’m born with a very rare genetic disease called Ehlders Danlos Syndrome. EDS . Due to in Sweden how little is known we with EDS don’t get financial helpC even though the doctors are telling the social : welfare that they don’t want us to work since we have no collogen like normal people so nothing stays in place. I’m a single mom to a 5 year old boy and after again being denied help I took the only job there was … healthcare at a elder facility that now I’m only on hours if someone gets sick. Love the job !! Love the people ! But what it did to my body… I can not explain but it’s something I don’t wish on my worst enemy. September 20th I start school going forward to eventually become a psychologist. Criminologist. And more . Helping others. And understanding why to certain reasons … but I don’t know how I will be able to do it. I search for jobs , in Sweden it’s not easy. With my EDS … that’s a turnoff and unfortunately it’s stamped through workforce about me… so makes it nearly impossible. If I could get anyone to help me with anything ! There’s not words how thankful I’ll be !! And my son the same ! I’ll post pictures with follow ups the whole time. 
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What is EDS?

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.


Unfortunately I have an extreme rare type that has caused all my teeth to basically just crumble at the age of 4 according to my mom. 

Now at soon to be 31 I have a upper teeth that i have to take out and brush morning and night. I have one tooth thats actually mine on my upper teeth. Which is obly there to hold the protes in place. My surgery starts the 16th. To start putting the implantats in then it takes @ 3 months to heal till they can actually put “real” teeth in. But then my lower teeth… I have no teeth on either side to even be able to clutch my jaw: I can barely eat. 

I work and put my body through excruciating pain because I need to pay rent and take care of my son, he’s all I have. Well we have family but financially, it’s what it is.

I’ll never forget when I was helping an elder lady for the first time, and she had the same .. fake teeth.. and without needing to tell me anything, knowing I was new. I knew exactly the steps, the tablet that dissolves and cleans the fake in plant for the night or while you brush you brush your gums. And she asked “ wow how do you know all that !!? I even have to tell the top nurses how to do it right … and i thought for a second … decided, fuck it .. I’ll show mine. If I knew her reaction I would have never , she was so upset for me. How unfair and to a woman like so and so . She fled tears. And I guess in the nursing home it spread because I was getting hugs and that look… u know the look. Like I’m so sorry , but Pity … it’s not what I wanted. But me being me … I was finally able to make jokes and laugh about it. Which they loved even more. 

But this is only one of the ways EDS has effected sooo much of my life ….. i even superglued a tooth that constantly would let go everyday for nothing till they finally gave me a remis ( swedish for basically getting put in line for the hospital dentist) 

Yes Sweden, But No Health Care Might be free .. But like the saying goes “ you get what you paid for “ let that sink in. 

Dentist - not free at all. 


This is me after - on my blog www.fearless-beauty.com I’ll be able to add the videos of pre-surgery and now 


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Organizer

Michaela Vilson 
Organizer
Kalmar, H, Sweden
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