Hi, my name Tilly Smidt. I am born in 1960 and raised in the north of the Netherlands. I am married and we are living in Almere (near Amsterdam).
After struggling with my body (weight, pain) since the age of 11, I found out in November 2003 that I have Lipedema. I was fortunate to visit a MLD therapist who knew what Lipedema was. The therapist told me that it was a disease and that it was not my fault that I had it. She also told me that Lipedema not the result was of my eating and that there was no medicine for it.
I was glad, it had a name but I was also angry of all those doctors who failed to diagnose me for more than 40 years.
After getting this diagnose I was left with a lot of questions.
My recent doctor and all the doctors I visited before, did not know anything about Lipedema, so I needed to get the information elsewhere. I soon found out that I almost couldn't get any information about it, so I decided to begin a search. I spend an uncountable amount of hours, weeks, months on the Internet looking for answers. I started writing to doctors in the Netherlands, but there was no doctor who answered the letters. Than I wrote to German doctors and some of them answered and gradually a found out a little bit more. It took several months and every month I found out more.
Soon I realized that there must be a lot of women out there who did not know that they have Lipedema. I wanted to tell other women about Lipedma because it is important to know in an early stage. The sooner you know, the better chance you have of controlling it.
I thought about how I could tell other women and then I decided that I wanted to make a website, so the information about Lipedema was there to find all over the world. My goal was, and still is, to help women getting diagnosed and help them to find answers. Also it is good to know for al those women that they are not alone and not to blame.
With the help of my husband I learned to make a website and I realized making my own website in the summer of 2004. I receive mails on a daily basis from women all over the world.
I am grateful to have been able to spread knowledge about Lipedema all over the world.
In the Netherlands we now have Lipoedem guidelines. More and more doctors know about Lipoedema!
They are all grateful about finding out about Lipedema, although is it not nice to have. “All the pieces of the puzzle fall into its place”. After reading, they understand what is happening with their body and why it is so hard to lose of maintain a healthy weight.
I always try to answer every mail I get. I know how important it is that there is someone who understands and is listening. And I do understand these women.
You are not alone.
I want to close my short story by sharing with you that I do believe that it is important to be positive. Stay in control of your own life (do not let it be controlled by Lipedema). You might have big legs or have other Lipedema problems but this does not mean that we can't enjoy our life.
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Welkom op de eerste en grootste site over de ziekte LIPOEDEEM - LIPEDEMA - LIPOEDEMA