As we approach NF2 Awareness Day on May 22, it’s heartwarming to see the efforts to raise awareness and support research for this condition. Real people affected by NF2 are sharing their journeys, shedding light on the challenges they face, and inspiring hope for better understanding and treatments.
These personal stories serve as powerful reminders of resilience, courage, and the importance of community. By sharing their experiences, these individuals contribute to a collective effort to improve the lives of NF2 patients and their families.
Today we meet Hermienke she explains to us how her childhood seemed very abnormal with a diagnosis so young, but she is a great fighter to our cause, raising awareness matters dearly to her and she is a fabulous advocate.
“ I had my first MRI when I was 12. At 13 my first vestibular schwannoma was radiated, and at 18 the other, along with radiation to a tumour on my brainstem and two surgeries to remove a tumour from my lumbar spine. I have a radiated tumour on my trigeminal nerve and last year I had four surgeries relating to vocal cord paralysis. I spent two weeks barely breathing through a hole in my neck and it was one of the worst experiences of my life.
NF2, is a lifelong genetic condition, that weaves itself into the fabric of existence, unyielding and unrelenting. There is no middle or ending to any of our stories.
Surgery, radiosurgery, and chemotherapy—are the only options we have. Yet, they come at a cost. Their impact reverberates through the delicate pathways of nerves, often leaving behind scars of lost function.
NF2 is for life, an unwavering companion. There is no cure, no magic wand to erase its presence. Instead, there is resilience, determination, and a shared journey among those who navigate its complexities
Please consider donating to research, sharing your story & raising awareness. You can donate here to our research https://lnkd.in/euWUGuTS
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
#nf2charity #nf2cure
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