My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.
She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run by people actually affected by the condition. And she also told me how the group, plus doctors, are focused on both the physical and emotional aspects of Ichthyosis. So important.
"Carly Findlay invited me to write a guest blog about my living with, and work for Ichthyosis.
My name is Karin Veldman, I live with my husband and two cats in Assen in Holland. I am not working anymore, but I spend some time raising ichthyosis awareness. I love knitting, and singing in a choir. I did a study in applying singing bowls for massage. I used to work in a hospital for a mental health.
I have Netherton Syndrome. I had my diagnosis at 39. Before that, I knew I had some kind of ichthyosis, but I didn’t know what form it was. I was born with the condition and I have spend a lot of time visiting doctors. One of them told me to expose myself in a museum, when I asked him if it could be Netherton Syndrome. This still makes me cry. In my younger days, I was bullied a lot, because I looked different. This is leaving scars on and under my skin. Sometimes the memories come back as if it is happening in the moment, called PTSD.
This is Lisette and Nicky.
In Holland, all people with Netherton Syndrome know each other. We were brought togetter in 2009 help a little girl, fighting for her health. Our first meeting was so special, so much emotions were shared. We heard other people tell our story…amazing. We are still meeting each other. In 2013 I wrote the website , also available in English.
Suzanne Pasmans, Dermatologist, immunologist and Professor of Paediatric Dermatology in the Erasmus Medical Center in Rotterdam is leading lady of the Netherton Expertise Center in Holland. Suzanne is pictured below.
This Center is doing research on the syndrome. There is a lot going on at the moment. They want to know more about our immune system. They want to know what the protein LEKTI means to our body. Where should it be working? What is missing? We all had to go to a medical photographer. Blood samples were taken. We all visited a psychologist, to talk about our experiences with the syndrome. The Netherton Expertise Team is a multi disciplinary team, they do very good work. They are working hard to raise awareness for European Expertise on Netherton Syndrome.
In December 2015 we started the Dutch patients association Vereniging voor Ichthyosis Netwerken. Now, five months later, we are proud to announce we have almost seventy members. And we are groing bigger. I strongly believe in that. My other board members voted me for president, so now I am the leading lady of this association. But we cannot do without our members. I am so aware of the importance of us doing this, it brings togetter so many people sharing the same experience. We lately had our first Meet and Greet. It was so great to meet everybody. There were a lot of stories, a lot of emotions. Our medical advisors were under the impression of what was shared. They think health care for people with Ichthyosis needs to improve!
Our goals as an association are to raise ichthyosis awareness. We want to know all about other peoples stories. We want to organise meetings, live and online. We have started a facebookgroop Vereniging voor Ichthyosis Netwerken. There is also our website. Our first Meet and Greet learned us about the importance of this. People with Ichthyosis need our support, they need medical support. Everybody deserves a good chance.
On this picture you see, from left to right, Eline (who has netherton syndrome), Eline's mother Anita and me.
On this picture you see me and my little friend Savio, and his daddy. My friend Eline was helping at the meet and Greet. She is standing at the door.
Another goal is to raise a big International Netherton Network, with our association as a solid base. We invite you, to become an international member of Vereniging voor Ichthyosis Netwerken. Togetter, we can make some difference!
This is our handmade mascotte VIN."
Carly, thank you for giving me a chance to write on your blog. Kind regards from Holland."
This post is for Ichthyosis Awareness Month. Read more about Ichthyosis here.