“I am APBD patient. I have known my proper diagnose for 3 years now. Before they thought that I had Hereditary Motor and Sensory Neuropathy: HMSN type II. I am the only one in the Netherlands with an APBD diagnosis.
I feel lucky because most people with my diagnosis are more limited. I have always been a little bit clumsy. I would often trip but now my worst complaint is stability. I now always have pain and weakness in my legs and less control of my bladder. I am able to walk 15 km in a day, but I will have more pain the following day and also use a walking stick for stability. However, I am very glad I can walk the distance. I also have an electric bicycle to get around. I am lucky that I am able to work 28 hours a week as a children’s nurse. I also live on the ground floor, which is very nice because climbing the stairs is getting more difficult.
I have a lovely family. I am married and have a son and a daughter and two dear grandchildren. They are 2 years old and nearly one. In April I will get one more! I am very lucky that I still can watch my grandchildren one day a week.
I hope I can work until age 63 and then I want to go enjoy even more of what is dear for me. I love traveling. For example, I have gone backpacking in Asia. We adapt our trips now to my abilities so we go on cruises more often and let our selves be pampered. This summer we plan to travel by camper for the first time.
The future remains uncertain but I keep hoping that medicines will be available for me and my fellow sufferers in time.“
Yvonne’s story is part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds on Rare Disease Day, February 28, 2019.
Please visit this webpage to learn more and click here to donate.