“Even as a child, I sensed that something was wrong with my body,” Sabi recounts. From a young age, she had difficulty controlling her hands and legs. She was always last at hiking camp, and in gym class, she was invariably the last one picked for the team. But the lively girl didn't let it get her down: “I felt fit, played a lot of volleyball, and attended the sportsassociation.”
But Sabi increasingly lost control of her body. Her hands and legs cramped up more and more frequently. Just writing caused such tension in her body that it hurt. But it was worst at night; Sabi was regularly plagued by painful cramps. As a result, she was tense and tired during the day.
"There are days when I feel like I've run a marathon, even though I haven't done much."
Eventually, Sabi couldn't take it anymore. On the recommendation of her family doctor, at the age of 32 she had herself examined at the muscle center of the Cantonal Hospital of St. Gallen. There, it was discovered that her nerve fibers were twice as thick as they should be and transmitted the impulses initiated by the brain very slowly. The genetic test confirmed the suspicion: type 1a of the disease Charcot-Marie-Tooth syndrome.
An uncertain future
Sabi finally had clarity, but it was frustrating: her illness is incurable. In the best-case scenario, the disease will eventually stabilize. However, it's also possible that the cramps will worsen, her muscles will atrophy, and she will eventually be unable to walk on her own.
Just four years after her diagnosis, the muscles in her thumbs had atrophied so severely that her fingers would repeatedly lock up. To prevent the nighttime cramps, Sabi took the Limptar N. However, after doing some research, she had a bad feeling: "I'll be dependent on medication for the rest of my life. I don't want to be taking chemicals every day for such a long time." Sabi also worried that the medication might be too strong for her.
Therefore, she looked for an alternative and quickly came across cannabis. Since the legal cannabis-based medication Sativex was only available with considerable bureaucratic effort and she would have had to bear the costs herself, she independently put together a suitable cannabis treatment: For the nighttime cramps, she took CBD drops and massaged her calves with cannabis oil. For acute pain, she resorted to THC, which she ingested through food or by smoking.
On their own
Sabi deeply regretted being left to her own devices with her cannabis therapy and having to do without medical advice. She felt that her self-chosen dosage was actually too weak, but didn't dare increase it without a doctor's assessment.
The turning point came two years ago when she went to a rehabilitation clinic to determine if she could reduce her work as a group leader at a daycare center to 50 percent. "I was falling over frequently and was in pain," she recalls. The doctors kept her there for five weeks and suggested she apply for full disability benefits right away. "Psychologically, that was a devastating blow, because I loved my job," she says. But in rehab, she learned to cope better with her illness and manage her energy levels. She was also introduced to various assistive devices, such as special bottle openers and knives, which have made her daily life easier ever since.
Since Sabi no longer wanted to obtain cannabis flowers illegally, she fought tenaciously for reimbursement. After the health insurance company rejected her application for a third time, she submitted a request for reconsideration and finally succeeded. For three years now, she has been an officially registered cannabis patient and can obtain her products from the pharmacy, where she receives excellent support and advice. "For some time now, my condition has been stable," she says happily.
Joy of life despite limitations
Thanks to cannabis therapy, Sabi is able to manage her daily life relatively well. Although she misses her job, she hasn't lost her zest for life. She occasionally shares glimpses of her hobby, singing, with her followers on Instagram. She's aware that her illness could also cause her vocal cords to atrophy. Sabi doesn't just want to use her voice for singing; she also wants to advocate for greater acceptance of her medication – cannabis.
For this young woman, it's a daily reality that cannabis use is still a taboo subject. "I was also taught at school that cannabis was the devil's work and that it would turn you into an addict," she says. Although her relationship with cannabis has improved since then, it's still difficult to talk openly about her therapy. She's still afraid of being stigmatized.
For Sabi, one thing is clear: greater acceptance of cannabis would help her and her health. "Therefore, I wish that political actors would listen more closely to patients like me. And that they would join us in fighting against the stigmatization of this medicine."
She is also actively involved in this cause herself: In addition to various therapies, she still finds time to volunteer with Medcan and the Association Legalize it! She is also active with the Association Löwenzahnkind, which supports children from families affected by addiction.
