[Poppy_EONNext]

Hey Community 👋

Did you know that May is Huntington's Disease Awareness Month? 💜

For many, Huntington's disease might seem like a rare condition. However, for families like mine, it's a constant presence. Experiencing the realities of HD within my own family, I understand the urgent need for greater awareness, improved support systems, and accelerated research into effective treatments and, ultimately, a cure.

What is Huntington's Disease?
HD is a genetic neurodegenerative disorder that progressively damages nerve cells in the brain. Often recognised for its involuntary movements (chorea), HD also significantly impacts cognitive abilities and mental health.

It is an autosomal dominant disorder, meaning if one parent has HD, each child has a 50% chance of inheriting the faulty gene and eventually developing the disease.

While there's currently no cure, incredible research is underway, and dedicated organisations like the Huntington's Disease Association provide vital support to individuals and families affected by HD.

Advice and Support
To the families navigating the complexities of Huntington's disease, please know that you are not alone. The journey of living with or caring for someone with HD can be emotionally, physically, and mentally demanding.

It's okay to ask for help. It's okay to feel overwhelmed. Reach out to the support networks available -
Huntington's Disease Association
Scottish Huntington's Association
Huntington's Disease Youth Organization

This May, let's increase our understanding and raise awareness for those living with Huntington's disease.

If anyone would like to share on this subject, we are here to listen and support 💜

[Lee_EONNext]

@Poppy_EONNext Thank you for sharing 💜 I had no idea about Huntington's Disease. It's great to see there is lots of support out there if needed

[Poppy_EONNext]

@Lee_EONNext It's tough when a diagnosis blindsides you. We were completely in the dark about Huntington's disease as we had no family history to go off. Even the medical professionals we consulted weren't immediately certain, making the diagnostic journey a lengthy one. Now that we've learned so much, I feel it's important to raise awareness about Huntington's because it's still a relatively uncommon condition 💜

[meldrewreborn]

@Poppy_EONNext

Back in the 1980's one of my staff was diagnosed with this illness. She'd had a very tough time of it medically speaking, having had one kidney and parts of her bowel removed due to other issues. Eventually, she was unable to walk along a corridor without holding on to the walls (due to tinnitus) and we concluded a medical retirement was appropriate. She was eternally grateful to me for facilitating that and we remained friends for many years afterwards. She had another 20+ years of life and without the stress of going to work she was able to live a relatively happy life.

[Poppy_EONNext]

That's really lovely @meldrewreborn 💜 It's good to know that your support made such a significant positive difference in her life, and the fact that you remained friends speaks volumes. It must have been incredibly challenging navigating that medically back in the 80s, especially with so much less understanding of the illness than there is now.
Thank you so much for sharing!