New research from the charity identifies significant gaps in the number of specialist centers able to reach mental health professionals. Centers that treat Huntington’s disease describe access to services as “inadequate,” with many centers reporting that less than 25 percent of people with the disease are able to access psychologists, psychiatrists, or counseling when needed. For Rainford, who had not heard of Huntington’s disease before taking up Ethan’s story on the BBC, the stats are “devastating” so he hopes the increased awareness will help provide members of the Huntington community with a “formal and comprehensive support system”.
Rainsford, 39, spoke exclusively to Express.co.uk about taking up Huntington’s story in Casualty, and said: “Part of the reason I’m so interested in supporting the campaign and Huntington’s disease is because when I first found out about it [about the storyline] I never heard of it.
I think this is probably a view shared by many people. It’s just one of those degenerative diseases that may have gotten under the radar. People have generally heard of more common ones like motor neurons and Parkinson’s disease, so when I first heard about them I didn’t really know what effect they had.”
In order to portray Ethan Huntington’s journey as accurately and convincingly as possible, Rainford worked closely with HDA to learn more about the impact it was having on individuals and their families.
The NHS explains that the condition primarily stops parts of the brain from working properly over time. Usually caused by a genetic defect in one gene, this means that the condition can be passed on from a parent with a defective gene. Thus, each child in the family has a 50 percent chance of inheriting the gene that causes the genetic disorder.
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When asked what was the most “eye-opening” thing he had learned about the disease, Rainford spoke about the fact that the disease can be passed down through generations. He said: “I think the most devastating thing I have come to grips with is the fact that there is a 50 per cent chance of passing it which is obviously incredibly high compared to other things.
“Lots of families have many of their own people who live with them and historically, they didn’t even know what it was. So for centuries there have likely been people with something we didn’t really know much about.”
Because of the symptoms of Huntington’s disease, many individuals may mistake it for other conditions such as Parkinson’s disease. Although both conditions involve involuntary movement symptoms, Huntington’s disease is hereditary and results from a mutated gene that a person usually inherits from a parent while Parkinson’s disease can be caused by a variety of genetic and environmental factors.
The first signs and symptoms of Huntington’s disease that affect individuals both mentally and physically include:
- Difficulty concentrating and memory lapses
- tripping and smashing
- Involuntary jerking or restless movements of the extremities and body
- Mood swings and personality changes
- Swallowing, speaking and breathing problems
- difficulty moving
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It is possible for individuals with the defective gene to live for years without developing symptoms, but at some point individuals will start noticing changes.
These symptoms usually begin around the age of 30 to 50 years, but they have been known to start earlier. For those diagnosed before the age of 20, it is known as juvenile Huntington’s disease or Huntington’s disease.
The HDA shows that although less than 10 percent of people with the disease will develop juvenile onset, it can be a serious illness that causes a few different symptoms. Young people are less likely to have involuntary movements. But they are more likely to experience muscle cramps and stiffness, which makes movements slower and more difficult. It is also possible to have epilepsy (seizures).
Mood changes, such as feeling frustrated or angry and finding it difficult to manage your behavior, also seem to be a more common symptom in people who develop Huntington’s disease as a teenager. This can often be the first sign of illness, and performance can also be lower in school.
However, it is important to note that many children and young adults with juvenile Huntington’s disease do not have behavioral problems. These symptoms may be related to other causes and not caused by Huntington’s disease. Therefore, it is best to seek advice and guidance from a GP if you are concerned.
As part of his work with the HDA, Rainsford befriended Gillian McNab, who works as a Scottish Huntington warrior and nurse. In addition to her inspiring work, McNab discovered that she has the genetics gene.
Shocked by her great work at the charity, Rainford invited McNab to come and play an additional role in Casualty, something that came naturally to the real-life nurse.
Speaking about the importance of people like McNab, who share their diagnosis, Rainford added: “The fact that she’s sharing that, you know, there’s a lot of life to live and she’s been amazing at that.
“She’s accepted her diagnosis, and she’s turning it into something very positive. And trying to help the charity as much as possible. She’s obviously asymptomatic right now, but she realizes that her symptoms start at some point. But for now she just wants to make the most of life.”
Once diagnosed, individuals are supported in how to manage symptoms to prevent them from getting worse. Current treatment methods include:
- Medications for depression, mood swings, and involuntary movements
- Occupational therapy to help facilitate everyday tasks
- Speech and language therapy for nutrition and communication problems
- Physical therapy to help with movement and balance.
However, the current HDA campaign found that in addition to those showing symptoms, 69 percent of those showing symptoms had significant mental health problems, with 71 percent of caregivers feeling their mental health was severely affected as a result. . their care responsibilities. Family members who tested negative for the gene felt guilt or shame toward relatives who had or might have Huntington’s disease.
To try to tackle this problem, Professor Hugh Rickards, Consultant Neuropsychiatrist and President of the Huntington’s Disease Association, is passionate about ensuring equitable access to mental health services for people living with Huntington’s disease. He said, “I see with my own eyes the challenges faced by patients, who must first deal with psychological issues to be diagnosed but then the complex mental health implications of the disease itself. This is not widely recognized or understood at an institutional level, so we need to make More effort to ensure that people with Huntington’s disease and mental illness have the same access to specialized mental health services as people living with other conditions such as schizophrenia.”
Huntington’s In Mind campaign for Huntington’s Disease Awareness Month. Learn more about the campaign here: https://www.hda.org.uk/huntingtonsinmind.