Do individuals who work for the NDF experience antagonistic treatment from their surroundings?
When we asked Carolyn Becher whether or not she received negative treatment for working for the Neuromuscular Disease Foundation, her response was that she never personally felt discriminated against. Although Carolyn knows many people might speak negatively about her and the foundation, she never lets it affect her. Carolyn has very thick skin, so comments do not affect her as easily as it would affect someone else. Generally, she does not care what people think or have to say about her. However, Carolyn is not embedded deep within the Persian society. Even though she herself is Persian, she is married to a non-Persian male. Also, the fact that she was raised in Pennsylvania meant that she did not grow up in a culturally Persian society. As a result, Carolyn never felt part of the Persian community in Los Angeles. Over sixty volunteers of the foundation are Persian and they have taken her in and made her feel welcomed in the Persian community.

How does a patient with HIBM get treated in society?

We were also curious to know if any of the patients experienced discrimination throughout their lives due to having HIBM. Carolyn goes on to explain that even though patients do not get discriminated against, many patients do feel ridiculed. In general, there is an excessive amount of attention directed at a person who has any form of disability. In a similar manner, those who have HIBM experience unwanted attention-- stares, pointing and whispering-- within and outside of the Persian community. One might hope that the family and close friends of HIBM sufferers would be more nurturing and accepting of their situation, but unfortunately, that is not always the case. Carolyn has highlighted how upsetting it is when the Persian community does not support patients whose condition is community-based, citing the example of an HIBM sufferer’s negative experiences.



It is extremely unfortunate for society to ignore the condition instead of accepting it. Not only do patients experience lack of acknowledgment and love during social gatherings, but they also experience unwarranted staring and mockery.

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