Rare Care interview: Petra Poulissen about living with the Goldenhar syndrome
Today, we have a real treat for you in store: we are talking with Petra Poulissen. Petra works for Rare Care as an expert by experience. She is from the Netherlands and lives in a tiny village near Nijmegen called Molenhoek. Let’s dive into Petra’s interesting life, talk about her rare condition and what she does for Rare Care.
Petra’s interesting resume
To start, let’s talk about Petra’s younger years because she has a unique resume. Petra started out working for McDonald’s and stayed there for almost 10 years. Then, she decided to start for herself and so she made an interesting career switch. Petra started to work in coaching. She worked as a coach for 12 years, specializing in working with people with autism.
Due to a robbery and some other (personal) traumas, Pera decided to stop paid work. However, that didn’t stop her from sharing her knowledge. She is now more valuable than ever in her work for Rare Care. Besides that, she has a crucial role in her own African percussion group as the conductor. Now, let’s talk about Petra’s life (before and during Rare Care) in more detail.
The Goldenhar syndrome
Petra is diagnosed with the Goldenhar syndrome within the OAVS (Oculo-Auriculo-Vertebral Spectrum). She was diagnosed when she was 28 years old. This didn’t come as a surprise to her: “I always knew that ‘something’ was wrong with me. It took me 10 years to find out what! My life changed a lot because now my syndrome was recognized and I could help others with the same symptoms to find their diagnoses too. I started to look for peers and joined the patient organization, immediately. Now, I have a worldwide network and help a lot of people in their search for help in any form.”
"So our lives are very much similar. We have the same aches and pains."
There is no way to be fully ‘cured’ of Goldenhar syndrome. You can have operations, such as operations on your spine or facial bones, or get an indication for a hearing aid. Goldenhar is so different per person that it is in no way possible to tell what the treatment should be. Petra explains: “For me, my internal organs are more affected than ‘the outside’ so I need to take special care of my one kidney and do not have any facial operations. For 3 years I have a BAHA (bone-anchored hearing aid).”
Looks can deceive
Petra looks great, that is a fact. But how someone looks does of course not have to represent how they feel from the inside. Still, people tend to sometimes forget that Petra has a rare condition. Petra: “They say, ‘you act normal’ or ‘I cannot see that you have something’. That hurts sometimes. It is hard to say but in this world, it is better to have a big visible malformation instead. In the past, I felt that I always had to defend myself. If I’m around other people with Goldenhar it is true that my visible signs are less than others but when we talk more you’ll find out that we have a lot in common on the inside or that I have multiple symptoms more on that part. So our lives are very much similar. We have the same aches and pains.”
"Rare Care could have helped me in my search for information. It wouldn’t take me ten years to find out what my syndrome was/is. It also would have helped me to inform my family doctor and specialists."
The internet to the rescue!
Looking back to her past, Petra found that she could have had some more help regarding the acquiring of information about her rare condition. Nowadays, we have the internet and (nearly) everybody knows how to navigate it. Back in the days, there wasn’t a virtual place that was as easy to visit. Still, even now, it is hard to find information about rare conditions in one place. Petra: “Rare Care could have helped me in my search for information. It wouldn’t take me ten years to find out what my syndrome was/is. It also would have helped me to inform my family doctor and specialists.”
Something that also helps, is the way that people living with rare conditions are portrayed nowadays. The focus can quite often be that it can make life harder. Petra does not agree with this vision: “I use a few keywords for explaining the positive experiences I have gained whilst living with a rare condition: perseverance, positivity, and spokeswoman.” This is also the way that Rare Care talks about people with rare conditions, as people that have a lot of positive and valuable experiences/information to offer for society.
"I would like to let them all know that every day is to consider a bonus day. Take full responsibility for- and joy out of that day cause you don’t know what tomorrow will bring."
Petra and Rare Care
You might be wondering how Petra got involved with Rare Care. She had been involved in a lot of projects concerning rare conditions. Then she met Liesbeth. They found out that their goals aligned and in 2017 decided to work together on fulfilling those goals. At this moment, Petra’s function is to deliver content for the site, check documents, help with the backend and to let the world know that Rare Care is online!
Why it is important for people as Petra -experts by experience– to be included in a platform as Rare Care, she says: “I don’t take life for granted. If you’re born healthy you have a great start. If you’re born with imperfections you have a major struggle. As a person living with a rare condition, I would like to let them all know that every day is to consider a bonus day. Take full responsibility for- and joy out of that day cause you don’t know what tomorrow will bring.”
Now that Rare Care is a fact, Petra and her colleagues have proven to the world that they can deliver. That people that live with rare conditions are strong and are a big value to society. Petra, however, is not yet satisfied: “My goal in the future is very closeby. I dream of Rare Care being big and helpful for thousands and thousands of people, patients, and doctors. Rare Care started out small with under ten conditions but I would like to grow to the 7000 rare conditions as there are. For me, however, it is important to be in the here and now …. I would like to stay involved in this project as long as possible.”
And we are very sure that you will be, Petra. Thank you so much for sharing your very inspiring, interesting story. We are very sure that we will be hearing more from you (and the other great people at Rare Care) soon.