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Joseph Samaha, Jim Dagher, Shayan Abdollah Zadegan

Huntington’s disease (HD) is a neurodegenerative disease inherited in an autosomal dominant manner. It is caused by an expansion of cytosine, adenine, guanine (CAG) repeats within the huntingtin (HTT) gene, which is located on chromosome 4. This pathological expansion of CAG repeats results in the production of a mutant huntingtin protein with an abnormally long polyglutamine […]

Shekita Green, Rare Disease Day 2022: Living with neuromyelitis optica spectrum disorder (NMOSD) – A patient perspective

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Published Online: Feb 24th 2022

Shekita Green (USA) is living with neuromyelitis optica spectrum disorder (NMOSD) and joins us for Rare Disease Day to share her experiences. She discusses her initial symptoms, the journey to diagnosis and her current treatment regimen. Shekita also talks about the strategies she uses to reduce the impact of NMOSD on her day-to-day life.

Touch Medical Media is supporting Rare Disease Day (28 February 2022) to shine a light on healthcare inequalities for people living with rare diseases, focusing on patient quality of life and the difficulty of diagnosing patients early.

Questions:

  1. What symptoms marked the beginning of your journey with NMOSD, and when did you get your diagnosis? (0:14)
  2. How has living with NMOSD affected your life and what support is important to you? (1:13)
  3. Does your current treatment regimen allow you to aim for a ‘normality’ of life and how do you cope with relapses? (2:32)

Disclosures: Shekita Green has nothing to disclose in relation to this video.

Support: The production of this video was supported by Touch Medical Media.

Other content available in support of Rare Disease Day includes:

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