My journey to joining the Huntington’s disease community

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by Bionews Staff |

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Five photos showing people affected by Huntington's disease, who are sharing their real-life stories during Huntington's Disease Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'
A woman stands outside on a sunny day with her hands in her pockets.

Since her sister-in-law’s diagnosis, Kemi Olafare has been advocating for the Huntington’s disease community. (Photos courtesy of Kemi Olafare)

This is Kemi Olafare’s story:

On reflecting on Huntington’s disease (HD) and its impact on my world, I can categorize my journey into three stages.

1. Awareness is an appropriate starting point. Before my sister-in-law was diagnosed, there was a feeling that something wasn’t right, but we were unable to define what that “something” was. I’m sure we’ve all encountered this — differences in physical, mental, or emotional patterns and an intuition that a person isn’t at 100%. It’s not easy to explain this to doctors; feeling uncharacteristically clumsy or forgetful doesn’t necessarily warrant urgent and detailed investigation. HD is a hereditary condition, but unless you’ve been informed that you’re at risk, a combination of having a geographically dispersed family and living in various locations, resulting in changes to your medical team, can make the condition hard to trace through family history.

A woman smiles while holding a pink sign that reads "I am supporting Huntington's disease awareness month."

Olafare represents the Huntington’s Disease Association at the Houses of Parliament in the U.K.

I remember my sister-in-law telling me she had been diagnosed. I’d never heard of Huntington’s; I could barely pronounce it. I didn’t ask too many questions or research what it was. I guess I didn’t see any immediate impact, nor did there seem to be anything I could do to help. Someone in my family circle did look it up and I was told that they were really upset. Still, I didn’t ask. Perhaps I didn’t even want to contemplate reality.

2. Next was seeing the reality of HD manifesting. Sometimes this took place over time — noticing a gradual deterioration in walking, and day-to-day tasks becoming a struggle. On other occasions, it was a sudden realization that my sister-in-law’s appearance, speech, and comprehension were drastically different. A condition that I didn’t know existed a few years ago was now having a profound impact on us all.

3. My rainbow has been becoming part of the HD community. This started with me finally visiting the Huntington’s Disease Association website to seek support for specific queries and then becoming part of HD Voice, an initiative that gives Huntington’s families a voice in research. I’ve met and continue to meet incredible people working in this space and have had many insightful conversations. I’ve been able to provide support through fundraising, assisting with research, and visiting the U.K.’s Houses of Parliament. I remain ever thankful to be part of this network. It’s a great illustration of people being willing to help during the most difficult of circumstances.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series.