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<\/p>\nMaysoun (41) lives in Almere and still works as a management assistant in mental health care. She is social, positive, and enjoys cooking, fermenting foods, and going out on her mobility scooter whenever possible. But behind that positive attitude lies a life in which adapting, letting go, and finding balance again are part of her daily reality. Together with her mother and her 10-year-old daughter, she lives with HSP.<\/p>\n
\u201cI\u2019ve actually been in and out of hospitals since I was two years old,\u201d she says. Her mother also has HSP, so it became clear at an early age that she had the same condition. Her mother\u2019s diagnosis followed concerns about oxygen deprivation at birth. When similar signs appeared in Maysoun, the medical puzzle was quickly solved. From the moment she started walking, her feet turned inward and she walked on her toes. As a child, she wore casts, used braces, and began physiotherapy at the age of eight. \u201cI remember being involved in medical treatments from the age of four.\u201d\n\nAt school, physical education was challenging, and she often fell. Yet she always maintained a positive outlook. \u201cMy glass is always half full. I managed.\u201d Her father played an important role in that. \u201cHe always joined school trips so I wouldn\u2019t have to walk everywhere.\u201d<\/p>\n
Since the age of 26, she has received botulinum toxin treatments. \u201cIt doesn\u2019t take the condition away, but it helps enormously.\u201d In the end, the name of the condition mattered less to her than how she dealt with it. \u201cI\u2019ve always known it was HSP because of my mother. But for me, living my life was more important. You are who you are, not what you have.\u201d<\/p>\n
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HSP affects her daily life constantly. Since July 2025, she has been wheelchair-dependent. She can still walk short distances with a cane, for example from the car to a doorway, but her mobility has changed dramatically.\n\n\u201cIt\u2019s a form of living grief,\u201d she says openly. \u201cWhen I realized I could no longer walk the way I used to, I had to reorganize my entire life. You really have to make a mental shift.\u201d<\/p>\n
Energy management is another major factor. \u201cShowering, getting dressed, or doing anything physically demanding costs a lot of energy. I plan my life carefully so I can save energy for the things I enjoy.\u201d\n\nShe uses a mobility scooter and drives a car with hand controls to remain as independent as possible.<\/p>\n
Protecting my energy. I have to set boundaries for myself.\u201d\n\nHousehold tasks have also become difficult. \u201cMaking a bed or doing laundry is no longer possible.\u201d Still, she refuses to define herself by her limitations. \u201cIt\u2019s important to keep seeing your own value.\u201d<\/p>\n
Because both she and her partner work, they do not qualify for additional assistance. Fortunately, she has a strong support network. \u201cMy friends help me enormously. I\u2019m surrounded by wonderful people.\u201d<\/p>\n
HSP affects three generations of her family: her mother, herself, and her daughter. Yet each experiences the condition differently.\n\n\u201cMy mother was one of ten children and the only one with HSP. It was much harder for her because so little was known about it back then.\u201d<\/p>\n
She benefited from recognition and guidance. \u201cMy mother was an example for me. Despite everything, she lived a normal life.\u201d\n\nShe can talk openly with her daughter about the condition. \u201cWe understand each other well and can share a lot.\u201d\n\nToday, care and support services are also much better organized. Whereas physiotherapy once consisted mainly of painful stretching exercises, the focus is now on balance, mindful movement, and preventing falls and pain. She still attends weekly physiotherapy sessions with a neurological therapist, performs daily exercises, and has also participated in hydrotherapy.<\/p>\n
She describes disease progression as \u201ca continuous process of saying goodbye.\u201d Time and again she has had to give things up: walking, bending down, climbing stairs, and independence.\n\n\u201cIt\u2019s a constant process of accepting that certain things are no longer possible.\u201d\n\nYet she has found her own way of dealing with these changes. She consciously seeks happiness in small things.\n\n\u201cI\u2019m very social. My friends, cooking, and fermenting make me happy.\u201d\n\nWhen her condition suddenly worsened, she taught herself how to crochet. \u201cJust find something new that you can still do.\u201d\n\nOn sunny days, she enjoys going out on her mobility scooter. \u201cYou have to keep looking at what is still possible.\u201d<\/p>\n
What helps her most is structure, acceptance, and recognition. \u201cDoctors don\u2019t always need to have a solution immediately, but I do want to feel heard.\u201d<\/p>\n
According to her, many people do not understand how complex HSP really is.\n\n\u201cPeople often think only of stiff muscles, but it\u2019s actually a combination of overactive muscles and muscles that do not function properly. That creates unusual strain throughout the body.\u201d\n\nBalance is therefore incredibly important\u2014and at the same time the hardest thing to achieve.<\/p>\n
Her most important message to others with HSP and to those around them is clear:
\n\u201cYou are not HSP. It is something you have. I want to focus on who I am: my strengths, my character, and my life. That is so much bigger than a diagnosis.\u201d\n\nShe also hopes that future research will focus more on the underlying causes of HSP.\n\n\u201cIn my case, the cause lies in the nerves, and there is still very little that can be done about that. Most treatments today focus on managing symptoms. I hope that one day more attention will be given to the real cause.\u201d<\/p>\n
Would you like to share your story as well? Let us know via email at office@life4hsp.com.<\/p>","protected":false},"excerpt":{"rendered":"
Maysoun (41) woont in Almere en werkt ze nog altijd als managementassistent binnen de geestelijke gezondheidszorg. Ze is sociaal, positief en geniet van koken, fermenteren en eropuit gaan met haar scootmobiel wanneer het kan. Maar achter die positieve instelling schuilt ook een leven waarin aanpassen, loslaten en opnieuw balans vinden dagelijks terugkomt. Samen met haar […]<\/p>\n","protected":false},"author":6,"featured_media":4204,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[5,1],"tags":[],"class_list":["post-4196","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-ongecategoriseerd"],"acf":[],"yoast_head":"\n