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Rare Disease Day: Rare diseases we know of because of celebrities

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When we think about common diseases or health conditions, diabetes, heart diseases and the likes top the list. Rare Disease Day, which falls on the last day of February, is all about raising awareness for rare diseases. This year, February 28 will see people raising awareness about diseases that aren’t often discussed. Celebrities play a great role in highlighting different things, including rare diseases. Read on to find out which all famous people died due to a rare disease or have been living with one.

HealthShots compiled a list of 5 famous people with rare diseases.

1. Pervez Musharraf died of Amyloidosis

On February 5, 2023, reports emerged of former Pakistan president Pervez Musharraf dying after battling a prolonged illness with amyloidosis. According to NHS, amyloidosis is the name for a group of rare and serious health conditions that are caused by a build-up of amyloid (abnormal protein) in organs and tissues. When there is a build-up of amyloid proteins, it can make it tough for the tissues and organs to work properly. If treatment is not done, it can lead to organ failure. Currently, there is no cure for amyloidosis, and the amyloid deposits cannot be directly removed. But people can opt for treatments to stop more of the abnormal proteins being produced. The treatment will mostly involve chemotherapy.

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Rare Disease Day is about raising awareness about rare diseases. Image courtesy: Shutterstock

2. Bruce Willis announced he has Frontotemporal Dementia

Very recently, Hollywood star Bruce Willis announced that the 67-year-old was suffering from frontotemporal dementia. Last year, he was diagnosed with aphasia, which causes difficulties with speech. But this has progressed and now Willis is living a life with frontotemporal dementia, which is an uncommon type of dementia that causes problems with behaviour and language. As per NHS, frontotemporal dementia affects the front as well as the sides of a person’s brain. Unfortunately, scientists are yet to find a cure for frontotemporal dementia.

3. Varun Dhawan has been battling Vestibular Hypofunction

In an interview in 2022, Bollywood actor Varun Dhawan revealed that he had been battling against Vestibular Hypofunction, which is a heterogeneous disorder of the peripheral or rarely central vestibular system. It leads to disabling symptoms such as imbalance, dizziness, and oscillopsia, according to Journal of Neurology.

Dhawan said in the interview at a conclave that he had “shut down.” He admitted to having vestibular hypofunction where basically “your balance goes off.” Later, he shared that he was doing much better with the help of swimming, yoga, physiotherapy and a change in lifestyle. He also soaked up the sun, which he said is the “most important.”

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Singer Celine Dion revealed that she suffers from rare neurological condition. Image Courtesy: Instagram/Celine Dion

4. Celine Dion revealed she faces Stiff-person Syndrome

In December 2022, singer Celine Dion revealed that she was suffering from Stiff-person Syndrome, which is a rare and progressive neurological disorder.
According to the National Institute for Neurological Disorders and Stroke, the muscles in the torso, arms and legs become stiff. In fact with time, people with this disorder may even develop hunched over postures. Some may be so disabled that they won’t be able to walk or even move. It’s possible to keep SPS symptoms under control with appropriate treatment. Oral diazepam, which is an anti-anxiety and muscle relaxant drug, may help to improve several symptoms. Medicines that alleviate muscle spasms may also help.

5. Justin Bieber was hit by the Ramsay Hunt Syndrome

Last year, pop star Justin Bieber’s fans were worried as it was revealed that he been diagnosed with Ramsay Hunt Syndrome. It is peripheral facial nerve palsy that is accompanied by a rash on the ear or in the mouth, according to Journal of Neurology, Neurosurgery & Psychiatry. Hearing loss, nausea, vomiting and vertigo are some of the other symptoms. Topical electronic stimulation, face yoga, breathing exercises and Kinesiology tape are some of the things you can try to recover.

6. Samantha Ruth Prabhu suffers Myositis

Popular Indian actor Samantha Ruth Prabhu has been open about her battle with rare disease Myositis, in which the body’s immune system attacks the muscles, rendering them weak. Due to the ensuing inflammation and muscle damage,  activities as basic as getting up from a chair, holding objects in the hands or climbing stairs may seem like a task. Samantha has been sharing nuggets of her recovery process with her fans through social media, and has remained positive about giving the condition a tough fight.

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