{"id":3606,"date":"2025-06-28T22:23:36","date_gmt":"2025-06-28T20:23:36","guid":{"rendered":"https:\/\/life4hsp.com\/?p=3606"},"modified":"2025-09-01T20:38:26","modified_gmt":"2025-09-01T18:38:26","slug":"door-zijn-spierziekte-verloor-alex-zijn-partner-en-bedrijf-niet-zijn-positiviteit-geef-mijn-leven-een-9","status":"publish","type":"post","link":"https:\/\/life4hsp.com\/en\/door-zijn-spierziekte-verloor-alex-zijn-partner-en-bedrijf-niet-zijn-positiviteit-geef-mijn-leven-een-9\/","title":{"rendered":"Due to his muscle disease, Alex lost his partner and his business \u2014 but not his positivity: \u201cI give my life a 9.\u201d"},"content":{"rendered":"

Bron: RTL\u00a0<\/a>\u00a0 Auteur: Roxanne Vis<\/p>\n

HSP? If you've heard of it before, it's probably as an abbreviation for \"highly sensitive person,\" the way some people describe themselves. But HSP is also a rare, hereditary, incurable disease that affects around a thousand people in the Netherlands. Alex Sijm (49) is one of them. The disease has drastically changed his life.\n\"Friends and family can't help me accept the decline. That\u2019s something I have to do on my own.\"<\/p>\n

As a child, he already walked \"differently.\" Alex had a noticeable gait. When he was about 6 or 7 years old, his parents took him from one doctor to another. But no clear cause was found.\n\"They said the spinal cord was probably damaged around birth.\"<\/p>\n

It seemed manageable; despite the unusual walk, he could do everything others could\u2014and more. Alex dreamed of a career as a circus director, and he became one, even though everyone said he\u2019d never make it.\n\u201cAt one point, I was running four circuses,\u201d he says. \u201cNot traditional circuses that traveled from A to B, but things like Circus in de Zorg (\u2018Circus in Healthcare\u2019), where I visited care institutions. And Gay Circus Amsterdam, in collaboration with the AIDS Fund. I worked day and night and was always on the road.\u201d<\/p>\n

That all went fine\u2014until, in 2022, he suddenly began experiencing all kinds of symptoms. At first, he blamed COVID. But one day, something happened he couldn\u2019t ignore.\n\u201cI was driving home on the A2 when I suddenly felt myself peeing my pants. I couldn\u2019t stop it. Of course, I was shocked. I thought: Holy shit, what is going on here? There I was, sitting with soaking wet pants and a drenched car seat.\u201d\nA serious wake-up call. \u201cNow something was really wrong.\u201d<\/p>\n

Spastic legs<\/h2>\n

He was soon able to go to the Radboud university medical center in Nijmegen, to the expert center for movement disorders. There, on July 11, 2022, he received the diagnosis that derailed the life he had so carefully built: he has HSP, hereditary spastic paraplegia.<\/p>\n

This hereditary disease of the spinal cord always involves spasticity in the legs but presents in many different forms. For some, it\u2019s limited to spastic legs and incontinence, while others also experience neurological problems such as coordination issues, memory loss, and learning difficulties. In some cases, it can lead to severe disability early on.<\/p>\n

In Alex\u2019s case, it appears to be the so-called \"pure\" form, meaning only his lower body is affected. From that alarming moment in the car, things went downhill quickly. \u201cWalking became more and more difficult, which caused severe back pain. The disease had always been stable in my case, but suddenly it started progressing.\u201d<\/p>\n

\"Leven<\/p>\n

Three years later, he is now in a wheelchair. Physically, he\u2019s lost a great deal, but it has taken its toll mentally too.\n\u201cI could no longer continue my work, so I had to sell my business. I also lost my partner; five months after the diagnosis\u2014on Boxing Day\u2014he told me he couldn\u2019t handle it. It felt like a bomb had gone off in my life that year.\u201d<\/p>\n

There\u2019s also a 50 percent chance his daughter carries the gene. \u201cAs a parent, that\u2019s the last thing you want.\u201d And next week, his house is going up for sale, because he can no longer live there. \u201cI can\u2019t manage the stairs anymore and need an adapted bathroom and kitchen. You can imagine: if all of that happens within three years, it has a major impact.\u201d<\/p>\n

Accepting the decline<\/h2>\n

What he finds hardest is accepting the decline. \u201cYou constantly have to reinvent the wheel. I call it \u2018living loss.\u2019 Sometimes I feel like a lonely cyclist on a barren country road, riding a broken bike without electric support, pedaling into the wind. Deeply alone.\nBecause even though I have the most loving friends and family around me who truly support me\u2014they can\u2019t help me accept the decline. That part, you have to do alone.\u201d<\/p>\n

But giving up is not in his nature. The title of the book he wrote about his experience says it all:\u00a0Staying Down Is Not an Option,<\/em>which he also turned into a theater show earlier this year. \u201cBeing on stage, inspiring people\u2014that gives me strength and energy.\u201d<\/p>\n

Incredible perseverance<\/h2>\n

The disease is incurable, but symptoms can be relieved. Every three months, Alex receives twelve botulinum toxin injections to relax his muscles and stop the spasms. And he exercises every day, because it's now clear that physical activity is crucial in managing the disease.<\/p>\n

\u201cIt takes an enormous amount of perseverance, because you get tired quickly. Someone once described it perfectly: it\u2019s like driving down the highway pulling a caravan with two flat tires, but still trying to go 120 km\/h. It takes a crazy amount of energy\u2014but fortunately, it gives me energy too.\u201d<\/p>\n

Alex is naturally positive and prefers to focus on what he can still do.\n\u201cThe wheelchair has given me a lot of freedom back\u2014I do all sorts of things. One month after I got the wheelchair last May, I went to a festival with it. A month later, I took my first flight. I just wanted to break through all those barriers right away. I even took wheelchair training, so I can use escalators at shopping malls. I\u2019m always looking for solutions to stay part of society.\u201d<\/p>\n

Raising 100,000 euros in a week<\/h2>\n

To raise awareness and funds for research, Alex and others founded the Life4HSP Foundation earlier this month.\u00a0Life4HSP<\/a>\u00a0\u201cBecause the disease is so rare, there was hardly any research into medications or quality-of-life improvements. There\u2019s still so little known about it. That\u2019s why we\u2019ve united as patients\u2014also internationally. A group of 1,000 people doesn\u2019t interest pharmaceutical companies, but 800,000 patients worldwide is a different story.\u201d<\/p>\n

A week after the foundation\u2019s launch, they had already raised over 100,000 euros. \u201cWe\u2019ve already been able to set things in motion, though much more money is needed. Studies are underway. It\u2019s still in its infancy, but at least something is happening. And that gives a lot of energy. And hope\u2014hope that one day there will be a better treatment, or even a cure.\u201d<\/p>\n

What the future holds for him remains uncertain.\n\u201cDoctors estimate that it will remain limited to my lower body and will eventually stabilize, but they can\u2019t say anything with certainty. That\u2019s the difficult part of this disease.\u201d<\/p>\n

Simply very happy<\/h2>\n

Still, Alex wouldn\u2019t trade places with anyone.\n\u201cIf you ask me to rate my life, I\u2019d give it a 9. That might sound strange, but everyone deals with something. One person loses a loved one, another is deeply unhappy in their job. Everyone has their share. I\u2019m just really happy, despite everything. I try to make the most of life and always set a new goal on the horizon. That\u2019s what I did with my circus dream, and that\u2019s still what I do. I keep looking for opportunities.\u201d<\/p>\n

Wil jij je verhaal ook met ons delen?\u00a0 Laat het ons weten en mail naar media@life4hsp.com<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

Bron: RTL\u00a0\u00a0 Auteur: Roxanne Vis HSP? \u00c1ls je er al van hebt gehoord, is het waarschijnlijk als afkorting voor ‘hoogsensitief persoon’, zoals sommige mensen zich omschrijven. Maar HSP is ook een zeldzame, erfelijke, ongeneeslijke ziekte, waar zo\u2019n duizend Nederlanders aan lijden. Alex Sijm (49) is een van hen. De ziekte heeft zijn leven ingrijpend veranderd. […]<\/p>\n","protected":false},"author":6,"featured_media":3253,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[12],"tags":[],"class_list":["post-3606","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nieuws"],"acf":[],"yoast_head":"\nSpierziekte HSP Alex<\/title>\n<meta name=\"description\" content=\"Alex Sijm (49) is heeft de spierziekte HSP. 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