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    Melissa Quekel - Type 9B Glycogen Storage Disease

    Melissa Quekel - Type 9B Glycogen Storage Disease

     

    Meet Melissa Quekel. She is currently 22 years old and lives in the Netherlands. Melissa is diagnosed with Type 9B Glycogen Storage Disease. This disease is a rare metabolic disease that affects the muscles and liver. Melissa Quekel lives with her fiancé in Noordbrabant in the Netherlands. They both love animals so much that they have a dog, a bird, a hamster, and many special goldfish. Melissa likes to put together puzzles, she likes to read, watch movies, and walk long walks. She works with disabled people. For this work, she participates in large meetings and is an ambassador for healthcare and welfare. She promotes work in the care for the disabled and provides information and courses. “I’ve always enjoyed writing, being interviewed, or explaining to others. I also give extra tutoring to other students at work about my condition or work at school. I also help students with assignments and I explain everything. Now that I am at home, I also like to write about my condition for my Instagram page. I hope to be asked more often in the future for interviews or something similar. For more awareness and acceptance.”

     

    Melissa says this disease is currently changing her life a lot. She says, “Until December, I always worked. I have had this disease all my life, but since December everything has been worse. I am at home now and cannot do much. I can’t make intensive or long efforts, because then my muscle complaints worsen. I also have almost no conditions. Due to my illness, I also have to always eat on time, think about my medication, and monitor my glucose levels. I can’t do the things that I want to do right now. I also have many appointments at the hospital.” She has had trouble since December dealing with this disease and honestly no one should have to go through this. 

     

    The initiatives Melissa is currently taking to raise awareness about this disease is that she regularly talks about her disease on her Instagram page, with her friends, and with others who have the same disease as her. She thinks that it is very important not to hide your disease, but to talk about it and to embrace it as something that is a part of you. The more people see something and ask, the better it is. You start small but more and more people become interested in what is different about you and how you deal with it. 

     

    Melissa wants to tell the world, “It doesn’t matter where you live, which rare disease or condition you have, or what you look like. It is about how you feel about it and what you can do with it. Do you want more awareness for rare diseases and disorders like me? Then don’t keep thinking this or just say that to one person. Make sure you are open about it. Make it known by talking about it as much as possible! Everyone is different, but you don’t always see that immediately.” I love, love, love this so much. Everyone is different in their own way, and some people may not always have a rare disease, but it doesn’t take away from the fact that not everyone looks the same, or not everyone acts the same, or not everyone likes the same things. Everyone is different and we must embrace that. We shouldn’t try to be like other people. Rather, we should try our best to be the best possible version of ourselves.

     

    Melissa’s advice to other patients is to talk to others in the same situation. She says, “You can learn so much from each other and get useful tips! Also nobody understands you better than someone who experiences exactly what you experience. What I certainly find important is to look at what I can still do despite my illness, and not at what I cannot do! It is not always nice or easy but I make the best of it and I am realistic about my current situation with my disease.”

     

    Melissa is a very strong woman who has amazing goals that she hopes to achieve. I am absolutely positive that she will reach those goals. She has amazing intentions and she is striving for absolute excellence. She is an optimistic person and always looks for the best in others. I love that about her. She is someone I want to be. She has the attitude of someone I hope to be in the future. I’m glad I got to interview her, and this blog post may be a little late (due to the COVID-19 panic), but it’s finally out!

     

    Here are some websites with more information regarding this disease:

     

    https://rarediseases.org/rare-diseases/glycogen-storage-disease-type-ix/

    https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=11266&MISSING%20CONTENT=Glycogen-storage-disease-type-9&search=Disease_Search_Simple&title=Glycogen-storage-disease-type-9

    https://www.agsdus.org/type-ix.php

     

    Feel free to check out her Instagram account @melissaquekel.

     

    Thank you!

     

    • Anisha Yellamraju

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