{"id":4186,"date":"2026-05-21T09:35:57","date_gmt":"2026-05-21T07:35:57","guid":{"rendered":"https:\/\/life4hsp.com\/?p=4186"},"modified":"2026-05-21T12:25:21","modified_gmt":"2026-05-21T10:25:21","slug":"eerst-een-andere-diagnose-het-verhaal-van-elizabeth","status":"publish","type":"post","link":"https:\/\/life4hsp.com\/en\/eerst-een-andere-diagnose-het-verhaal-van-elizabeth\/","title":{"rendered":"First a Different Diagnosis \u2013 Elizabeth\u2019s Story"},"content":{"rendered":"<h2>Then It Turned Out to Be HSP<\/h2>\n<p>Elizabeth Witteveen Rhijnsburger (43) lives together with her husband Jan Peter in Zeewolde. Together they form a loving family with their dog Puk and cats Bram and Pien. \u201cTo us, they truly feel like our children,\u201d Elizabeth says.<\/p>\n<p>Drie jaar geleden kreeg Elizabeth de diagnose HSP. Daar ging echter een lange periode van onzekerheid aan vooraf. \u201cIk had al eerder een andere diagnose gekregen, namelijk ALS, maar mijn klachten werden steeds erger. Ik werd stijver, lopen ging moeilijker en ook praten kostte steeds meer moeite. Daarom ben ik voor een second opinion naar het <a href=\"https:\/\/www.umcutrecht.nl\/nl\/revalidatie-bij-spierziekten\">UMC Utrecht<\/a> gegaan.\u201d Bij de afdeling Neuromusculaire Ziekten werd verder onderzoek gedaan. Uiteindelijk kwam daar de diagnose HSP uit.<\/p>\n<p>\u201cFor my husband and me, that was a very tense period. You surrender yourself to the expertise of doctors while at the same time living with the uncertainty of what the outcome will be.\u201d<\/p>\n<h2>Living with HSP<\/h2>\n<p data-start=\"940\" data-end=\"1007\">The disease has a major impact on Elizabeth\u2019s daily life. \u201cHSP affects virtually everything. I need care 24 hours a day. My husband takes care of me and even had to give up his job because he became increasingly worried and I can no longer be left alone.\u201d<\/p>\n<p>\u201cThe biggest challenge for me is that I need a lot of help and only have about 25 percent of my energy left. That means I have to make choices every single day. I find that difficult, because energy is such an intangible thing. You only realize how valuable it is when you gradually lose it. Since receiving the HSP diagnosis, a lot has changed. On the one hand, I\u2019m not getting better, but on the other hand, all the puzzle pieces finally fell into place. That gives me peace of mind and helps me mentally.\u201d<\/p>\n<p data-start=\"1586\" data-end=\"1664\">Several muscle diseases occur in her family, although HSP was never officially diagnosed before. \u201cIt goes back five generations, always from mother to daughter. Sadly, my mother and grandmother have passed away, so I can no longer talk to them about it.\u201d<\/p>\n<h2>Enjoying the Small Things<\/h2>\n<p>Elizabeth speaks openly about the changes in her life. \u201cI\u2019ve increasingly found my rhythm in daily life, although it still remains a challenge at times. That\u2019s also because I\u2019m quite stubborn. At 28, I was declared permanently unfit for work. I found that very difficult to accept. It felt as though I suddenly received a label. Even so, I continued doing volunteer work, but when that eventually became impossible too, I had to stop that as well. With HSP, you constantly have to adapt yourself again whenever your condition worsens. That isn\u2019t easy.\u201d<\/p>\n<p>Despite everything, Elizabeth consciously tries to enjoy the little things in life. \u201cNowadays, I enjoy small things. I love reading books and magazines from the library, watching television to relax, and sitting outside in my wheelchair when the weather is nice. I was raised with faith, and I draw a lot of strength from it. I\u2019ve also learned to appreciate small moments, like blossoming fruit trees or birds flying by.\u201d<\/p>\n<h2>My Message to Others<\/h2>\n<p>Elizabeth believes it is important for people to know more about HSP. \u201cWhat others should know about HSP is that it is a progressive disease. Fortunately, there are good aids and possibilities for symptom management that can support daily life.\u201d<\/p>\n<p>\u201cTo other people with HSP, I would say: try to enjoy the small things. Focus on what you still can do and find happiness in that. Life is far too short.\u201d<\/p>\n<p><strong>Carpe Diem.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>Toen bleek het toch HSP te zijn Elizabeth Witteveen Rhijnsburger (43) woont samen met haar man Jan Peter in Zeewolde. Samen vormen ze een warm gezin met hun hond Puk en katten Bram en Pien. \u201cVoor ons voelen ze echt als onze kinderen,\u201d vertelt Elizabeth. Drie jaar geleden kreeg Elizabeth de diagnose HSP. Daar ging [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":4187,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-4186","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Eerst een andere diagnose \u2013 het verhaal van Elizabeth - Life4HSP<\/title>\n<meta name=\"description\" content=\"Drie jaar geleden kreeg Elizabeth de diagnose HSP. 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