For Anne, HSP (SPG4), a hereditary form of hereditary spastic paraplegia, has always been part of her life. Her mother was diagnosed when Anne was still very young. Together, they share how the condition affects their daily lives, while also focusing on what is still possible rather than on what has been lost.<\/b><\/p>\n
For Anne\u2019s mother, the impact of HSP begins the moment she gets out of bed.\u00a0\u201cHSP affects my life day and night,\u201d<\/i>\u00a0she says.\u00a0\u201cGetting up, getting dressed, walking, and even simple daily tasks take much more time and energy.\u201d\u00a0<\/i>Their home has been adapted to make daily life easier. A stairlift helps her move between floors, and for longer distances she uses a wheelchair. For short walks, she still relies on two walking sticks. Even household chores have become challenging.\u00a0\u201cMoving pots and pans, lifting a bucket, or cleaning is often no longer possible. That\u2019s why I use a small trolley around the house to carry things.\u201d<\/i><\/p>\n
The condition has not only changed her life but also that of the entire family. Every outing requires careful planning: Is the location wheelchair accessible? Are there any steps? Is there an accessible toilet nearby?<\/p>\n
HSP runs in the family. Anne\u2019s mother, uncle, and aunt all have SPG4. Her mother was diagnosed around the age of forty.\u00a0\u201cI was four or five years old when my mother was diagnosed,\u201d<\/i>\u00a0Anne recalls.\u00a0Anne recalls. \u201cThe disease progressed gradually, so I grew up with it.\u201d\u00a0<\/i>It wasn\u2019t until she got older that she realized her mother walked differently from other parents.\u00a0\u201cThe mothers of my friends walked much faster. That was when I really understood that my mother moved differently.\u201d<\/i><\/p>\nManaging Energy<\/b><\/h2>\n
Almost everything requires extra energy, making careful planning essential.\u00a0\u201cIf I do too much or walk for too long, I\u2019m completely exhausted,\u201d<\/i>\u00a0her mother explains\u00a0. \u201cI can\u2019t do everything in one day. After dinner I often need to sleep for a while, and in the evenings I usually stay home.\u201d\u00a0<\/i>Despite this, staying active remains important. She attends physiotherapy, exercises regularly, and enjoys cycling on her adapted three-wheeled bicycle. Swimming and visiting the sauna also help keep her muscles flexible.\u00a0\u201cI have the most energy in the morning. That\u2019s when I try to do the things that matter most.\u201d<\/i><\/p>\nChoosing Joy<\/b><\/h2>\n
Receiving the diagnosis brought sadness.\u00a0\u201cYou feel far too young and still have so many plans.\u201d\u00a0<\/i>Even so, she refuses to let the disease define her.\u00a0\u201cI enjoy the things I can still do. I\u2019ve always been optimistic, and I try to hold on to that.\u201d\u00a0<\/i>Volunteering at a day care center for people with dementia gives her great satisfaction. She also enjoys cycling, reading, playing games with her family, and doing word puzzles.\u00a0\u201cA good day is a day when I have a purpose\u2014something meaningful to do.\u201d<\/i><\/p>\nA Remarkable Mother<\/b><\/h2>\n
Despite the challenges of HSP, Anne looks back on her childhood with warmth.\u00a0\u201cMy parents always took us on holidays and organized lots of activities. I never felt like I missed out on anything.\u201d\u00a0<\/i>As a teenager, however, she sometimes found it difficult when people stared at her mother.\u00a0\u201cBack then, I sometimes felt embarrassed. Now, what I feel most is admiration.\u201d<\/i><\/p>\n
She describes her mother as kind, optimistic, and caring.\u00a0\u201cI admire her determination so much. Despite everything, she gets up every single day and makes the best of it.\u201d<\/i><\/p>\nLiving with Uncertainty<\/b><\/h2>\n
Because HSP is hereditary, the future also plays an important role.\u00a0\u201cI\u2019ve been tested several times to see whether I carry the gene, but so far there\u2019s still no clear answer.\u201d\u00a0<\/i>That uncertainty has shaped the way Anne lives.\u00a0\u201cI make the most of life. I travel a lot, I\u2019m very active, and I even walked 110 kilometres in 24 hours to raise money for HSP\u2014also because I can still do it now.\u201d\u00a0<\/i>Her sister has made a different choice and prefers not to know, for now, whether she carries the gene.\u00a0\u201cIt remains a difficult subject. My mother\u2019s greatest hope is that the disease ends with her generation.\u201d<\/i><\/p>\nCaring with Love<\/b><\/h2>\n
Most of the care for Anne\u2019s mother is provided by Anne\u2019s father, but Anne also helps wherever she can.\u00a0\u201cI became responsible at a young age. You\u2019re always thinking about what still needs to be done at home.\u201d\u00a0<\/i>Yet she never experiences caring for her mother as a burden.\u00a0\u201cWe\u2019re incredibly close. Everything we do, we do out of love.\u201d\u00a0<\/i>At the same time, Anne believes families like theirs need more practical and financial support. For example, her mother would like to receive household assistance, but this has been denied under the Dutch Social Support Act (Wmo) because Anne still lives at home.<\/p>\n\u201cSee the Person First\u201d<\/b><\/h2>\n
According to Anne, there should be greater awareness of the less visible consequences of HSP. It is not only the difficulty with walking but also fatigue, bladder problems, memory issues, and difficulty finding words that have a major impact on daily life.\n\nHer mother also notices that people often stare at her.\u00a0\u201cThat\u2019s not a pleasant feeling.\u201d<\/i><\/p>\n
If Anne could share one message with people who meet someone living with HSP, it would be simple:\u00a0\u201cBe patient. Be kind and willing to help, but don\u2019t treat someone differently. Behind the muscle disease is simply a person.\u201d<\/i><\/p>\n
Despite all the challenges, the family continues to create special memories together. Two years ago, Anne took her mother on her dream trip to Rome.\u00a0\u201cWith a wheelchair and with HSP. It wasn\u2019t always easy, but we did it.\u201d\n\nSoon, they will travel together to Lisbon.\n\n\u201cWe refuse to be held back. What matters most to us is continuing to enjoy the things we can still do.\u201d<\/i><\/p>","protected":false},"excerpt":{"rendered":"
Voor Anne is HSP (SPG4), een erfelijke vorm van hereditaire spastische paraparese, altijd onderdeel van haar leven geweest. Haar moeder kreeg de diagnose toen Anne nog jong was. Samen vertellen ze hoe de spierziekte hun dagelijks leven be\u00efnvloedt, maar ook hoe ze blijven kijken naar wat w\u00e9l mogelijk is. Voor Anne\u2019s moeder begint de invloed […]<\/p>\n","protected":false},"author":6,"featured_media":4262,"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-4259","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-ongecategoriseerd"],"acf":[],"yoast_head":"\n