HDYou: Community Stories

HDYou Community Stories is a series dedicated to sharing stories from the HD community for the HD community. We are excited to include blogs to that program which will allow young people to tell their story through writing rather than through videos. Explore more HDYou Community Stories here.

The HDYou Community Stories is sponsored by uniQure, Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.

How Mental Health Inspired Mubeen

My name's Mubeen. I am 25, the eldest of my siblings, and I live in Pakistan. I am a caretaker for my mum and at risk for HD, thinking of getting tested.

What made you decide to start reaching out and connecting with others in the HD community?

HD is a rare, terrible, and equally unique disease, which, in my surroundings, no one knows of. So, reaching out to people facing HD was the best bet to learn more about it and get help to handle it. And now I feel like I should be helping others too and doing my part by being part of this community. One thing I noticed is that you need continuous support from people who understand and experience this disease; it's not a one-time thing.

Can you share what topics you like to focus on in your advocacy and education?

Huntington's disease really messes with mental health, whether you are aware of it or not. In my case, I first heard and learned about it when I was 23. But even before that, growing up in an HD-affected family was already detrimental to mental health. Had we known that it was HD, we might have prepared ourselves better. So, mental health would have taken less of a toll.

What role has mental health played in your understanding of HD, the community, and more?

HD already makes life difficult, but it can feel even harder when you live in a society where awareness and understanding of mental health are very limited.

Mental health conditions such as depression are often linked to being distant from religion or having weak faith, especially in a society where people may judge someone’s character by how religious they appear. Depression is also seen as weakness or as giving up instead of facing life’s difficulties. Furthermore, some people even make strange claims, such as saying that someone became mentally unwell because they studied too much. In short, mental health is viewed as a problem that shouldn’t have happened to someone in the first place.

Now imagine being at risk of HD, or having a parent or relative with HD. Depression, anxiety, panic attacks, and changes in behaviour or personality may all be part of the experience. In such an environment, it is easy to understand how stigma and hurtful comments can make life even harder.

Different mental health and cognitive conditions are often grouped together and labelled as “mad” or “crazy,” which creates even more stigma.

Access to mental health care can feel like a privilege here, especially when even basic healthcare services are scarce.

However, awareness is slowly growing among younger generations. More people are beginning to understand mental health and talk about it openly, especially as these challenges become increasingly common.

HDYou Community Stories Playlist

The HDYou Community Stories is sponsored by Neurocrine Biosciences, Prilenia, Ferrer, Novartis, Teva Pharmaceuticals, Skyhawk Therapeutics, Roche, and the Griffin Foundation.