Health : All about the ‘muscle-wasting’ disease myositis one must know

Recently, when Samantha Ruth Prabhu came out with a rare auto-immune condition, myositis, it became the talk of the town as few know about the disease. The Pioneer’s Shikha Duggal brings to you this detailed article on the condition while getting some popular doctors’ answers to some of the most frequently asked questions. Read on as we also spoke to the doctor who saw Samantha being treated for the same.

Celebrities are highly influential people whose actions are watched and often emulated by wide audiences. So when Samantha Ruth Prabhu came out with a rare auto-immune condition, myositis, all of a sudden, every publication started picking up on it and the news went viral across all social media platforms. What’s myositis? We wondered. We also expect her to be able to shape the public’s health-related  knowledge of this rare condition once she recovers. Meanwhile, we’ll enlighten you a little bit because the status remains unclear for many of the commoners. Dr. B. Kishore Reddy, the orthopaedic oncologist at Amor Hospitals, said, “Myositis is inflammation in muscles. There are various types of causes for it like metabolic, certain drug side effects, viral infections, cancers, and also autoimmune disorders.

The auto-immune part of it is due to our own defence mechanism acting against our own tissues. It can happen due to some genetic predisposition in a few cases! In such cases, other than muscles, joints, and skin, organs like the lungs, heart, bowels, and blood vessels can get involved. These can be life-threatening in severe cases.”

And, what happens if all the muscles are destroyed amid all this? “Basically, any movement in our body is because of the contraction of a specific group of muscles. How myositis is manifested depends on which group of muscles are affected.

Swallowing becomes difficult if throat muscles are involved, gripping objects is not possible if small muscles of the hand are affected, and similarly, walking might become difficult if muscles of the leg are involved. Of all these manifestations, breathlessness secondary to involvement of respiratory muscles is the most feared one!”, asserted Dr Kandaraju Sai Satish, Consultant Neurologist and Epileptologist, Yashoda Hospitals, Hyderabad.

Amongst many treatments for this, what caught our eye was the intravenous  administration of gamma globulin. Now, thinking how is this done? We got you. “The first thing to do in such cases is to find out the root cause of myositis and treat it. Certain investigations ranging from blood tests to muscle biopsies help in establishing the diagnosis and cause of it. Once this is done and the autoimmune cause is established, the mainstay of the treatment is corticosteroids, DMARDs in a few cases, and in refractory and special cases where we cannot use the above drugs, we tend to use immunoglobulins, which are prepared by pooling more than 10,000 plasma or blood donations. Due to this heterogeneity, they consist of antibodies directed against a broad spectrum of pathogens and self-antigens.Therefore, they act on the autoimmunity and neutralise it,” informed Dr Kishore.

But what about the frustration it brings? “When you become bedridden, that’s when the frustration kicks in. It starts to take an emotional toll on you. Help yourself with basic hygiene, watch for bed sores, acknowledge your emotions, take care of your spiritual needs, and enjoy what you can. Mood swings and depression can have a negative impact on overall health. Poor mental health hampers recovery, often causing grief, discomfort, and aches. Improving mental health or prepping up the mood is a huge challenge for caregivers and family members too. More importantly, as discussed in the beginning, whenever a celeb goes public about their sufferings, it leads to more awareness about the disease and doctors agree with us,” said the doc, adding, “Knowledge will percolate, which will help bring out more cases. This will help a lot of patients who go undetected or undertreated in getting proper medical attention and the required treatment.”

Continuing this conversation, the neurologist from Yashoda said, “It is commendable of Samantha to vocalise about her medical issues in the public domain.This will now help to create support groups for the people affected by specific ailments.They started a health trend! But, on the contrary, brief celebrity messages cannot explain the downside of screening, such as false positive results, more tests, costs, and anxiety, and here we come and play our parts.”

We also spoke to Dr. Sarathchandramouli from KIMS, who revealed, “Consider anti-bodies as police, but a few of them are doing mischievousness in her body and abusing her system inside.Think of some terrorist activity going on in her body; her own cells are being attacked. This is due to molecular mimicry, which occurs when these antibodies make a mistake. In this kind of situation, you should go step by step! The frustration kicks in when the patient starts to feel weak. I am assuming her first step would have been unable to get up from a sitting position.

For example, while going to the bathroom, because this has to do with her legs. Weakness is in there too! When it comes to arms, they can’t lift objects above their shoulders. A few cases have swollen eyes, and I have got to know Samantha is one of them. Rare cases also show rashes around the eyelids.The rash colour won’t be red, it will be violet. I feel overactivity during her hectic schedule can be one of the reasons for this condition’s development. Immunity discirculation all over.

There is THE MYOSITIS ASSOCIATION TOO, and in 1999 they began a word-of-mouth campaign to increase recognition of myositis in health care and patient communities. And then the purpose of Myositis Awareness Month is also to create awareness about this little-known disease of the muscles that cause weakness, pain, and disability. Nationwide, myositis patients and their families observe the month of May as a time to educate the community about their rare disease. So, we must research more and hope for a faster diagnosis.”