“Even as a child, I felt that something was wrong with my body,” says Sabi, grinning mischievously. «Even at a young age, I always had difficulty controlling my hands and legs. That's why I always brought up the rear in the hiking camp. And in gymnastics class I was always chosen last for the team.” But the lively girl doesn't let it get her down: “I felt fit, played a lot of volleyball and attended the sports association . Because I just liked doing it.”
But as Sabi gets older, she loses more and more control over her body. Her hands and legs cramp more and more often. Even as she writes, her body tenses up so tightly that it hurts. But it's worst at night. Then Sabi is regularly hit by painful cramps. That's why she's tense and tired during the day.
“There are days when I feel like I've run a marathon. Even though I didn't do much."
At the age of 32, Sabi can't take it anymore. Following the recommendation of her family doctor, she was examined at the muscle center at the St. Gallen Cantonal Hospital. There you find that their nerve pathways are twice as thick as they should be. And they transmit the impulses initiated by the brain very slowly. The genetic test then confirms the suspicion that Sabi suffers from type 1a of Charcot-Marie-Tooth disease.
An uncertain future
Sabi finally has clarity, but it's frustrating. Her illness is not curable. In the best case, the course of the disease stagnates at some point. But it could also be that her cramps get worse, her muscles atrophy and at some point Sabi can no longer walk on her own.
Already today - at the age of 36 - the muscles in her thumbs have regressed significantly. The fingers keep blocking and Sabi has to help to get them moving again.
Limptar N tablets prescribed by her doctor . After researching the pharmaceutical drug, she has an uneasy feeling: “I will be dependent on medication for the rest of my life. I don't want to consume chemicals every day for such a long time. This is my body, my health and my decision.” Sabi also fears that the medication is too strong for her.
She looks for an alternative that would allow her to respond more specifically to her suffering and quickly comes across cannabis. There is a cannabis-containing drug called Sativex, which is legal. But the bureaucratic effort is too great for Sabi and the costs that she would have to bear herself are too high.
So she sets out on her own to find the right cannabis treatment. Today, Sabi takes CBD drops to combat her nightly cramps and massages her calves with cannabis oil. When acute pain occurs, she ingests THC through food or smoking.
Sabi regrets that she is on her own with her cannabis therapy and does not receive medical advice. She realizes that her self-selected dosage is actually too weak. But don't dare to increase it yourself. She would like a medical assessment for this step.
Normal everyday life thanks to cannabis
Thanks to cannabis therapy, Sabi can cope with her everyday life relatively well. She shares her joy of life not only with people at work, but also with her followers via Instagram. Every now and then you can hear the young woman singing there. Sabi enjoys this hobby to the fullest. Because she is aware that her illness could also cause her vocal cords to regress.
Sabi doesn't just want to use her voice for singing. She also wants to advocate for greater acceptance of her medication – cannabis.
Fear of prejudice
Because the young woman experiences every day that cannabis consumption is still a taboo topic. She experienced one of the reasons for this herself: "It was drilled into me at school that cannabis was the devil's work and that it would turn you into a junkie," she says.
Although Sabi's relationship with cannabis has improved, it is still difficult for her to openly say that she uses it for therapy. She is still afraid of being stigmatized.
For Sabi it is clear: more acceptance of cannabis would help her and her health. “I would therefore like the political actors to listen better to patients like me. And that they work with us against the stigmatization of this remedy.”
