In a show of tremendous willpower and determination, 16-year-old Sushma, hailing from Bengaluru overcame a rare life-threatening auto-immune disease and secured 76% marks and a distinction to clear her SSLC exam.  Sushma was suffering from Juvenile dermatomyositis for the past 2 years, a rare autoimmune disorder, where the immune system attacks blood vessels throughout the body causing muscle inflammation. The disease had severely affected her breathing muscles (muscles of the chest) and kidneys. She urgently needed dialysis, blood transfusions, and ICU supports along with steroid medications without which she would not have survived for long.

However, due to the economic condition of the family, the child was unable to receive the vital treatment which left her parents helpless and heartbroken. Efforts undertaken by the team of expert doctors at Aster CMI Hospital along with collaboration with a crowd-funding platform ensured the child’s survival and enabled her to appear for her exams. An ambitious young girl, Sushma always dreamt of becoming a lecturer one day. She was so driven by her aim that she never missed attending her school even when she was sick, but her aspirations were brought to a sudden halt when she severely fell ill two years back.

“My daughter suddenly complained of high fever and swelling on her face. A day before her sudden illness, she danced and sang on an occasion. So, we thought the activities strained her. But after a couple of days, her hands and legs were completely swollen, and rashes were beginning to show up. On the way to the hospital, she fell unconscious. We quickly consulted the doctor who told me that she is very critical and fighting for her life with a rare disease that is affecting major parts of her body. We were shocked and did not know what to do. But all we understood was that there was very little time left to save her, so we immediately admitted her in ICU.” said Sujatha, Sushma’s mother.

Symptoms of Juvenile dermatomyositis:

At the time of her admission at Aster CMI Hospital, 14-year-old Sushma presented several symptoms like fever, low platelet, rash over eyes, face and severe muscle pain and weakness, and also had renal failure. On further evaluation, it was found that the child had rashes over fingers (Gottron papules), a peculiar rash over eyes (heliotrope rash), hoarse voice and severe limb and respiratory muscle weakness, all of which indicated that the child was suffering from Juvenile dermatomyositis. The disease had led to respiratory failure in the child and she was put on ventilator support.

Given the severity of her illness, Sushma required intensive care in the form of regular blood transfusions, platelet transfusions, broad-spectrum anti-microbial, dialysis support, and immunomodulation (immunoglobulin injections, steroids) along with a 6-week long stay at the hospital. The cost of her treatment was estimated to be around 12-14 lakhs. But owing to the poor economic condition of the family, the child’s parents were unable to afford the treatment. Even after leaving no stone unturned, the child’s father who is the sole breadwinner for the family and is a priest at the temple was able to collect a sum of Rs. 7 lakh and were not able to meet the remaining amount. This is when Aster CMI hospital in collaboration with a crowd-funding platform came forward to raise the additional funds for Sushma’s treatment and played a vital role in saving her life.

Speaking about the cause of the disease and the complexity of the case, Dr Sagar Bhattad, Consultant, Pediatric Immunology and Rheumatology, Aster CMI Hospital said – “Dermatomyositis is a rare auto-immune disease where the immune system attacks organs and tissues of the self. There is no particular reason or cause of this disease. Unlike rheumatoid arthritis, where there is an attack on the joints, this disease primarily impacts the skin and muscle of the patients. Though it is more common in adults, we are now witnessing this in children as well. In Sushma’s case, she had severe muscle weakness and was unable to walk and breathe. By the time she was brought to our hospital, she had already developed respiratory failure and was put on ventilator support. Due to prolonged ventilation for more than a month, we had to conduct a tracheostomy enabling her to breathe. Later her kidneys had also shut down and she was put on dialysis support for a few days. Her condition was turning critical every day and during the initial few weeks of her treatment, we had thought, she may not make it. But our team fought on, as did Sushma and her family!”

“With the support from the funds raised through the crowd-funding platform, the family was able to continue her treatment and by the 3rd week, Sushma started showing recovery and by 6 months she started doing all her activities on her own. However, she still faced a challenge to hold a pencil or a pen for several months due to the severe muscle weakness in her hands. With the help of aggressive physiotherapy, she regained regular movements of the hand and could finally start writing! Today, as she has cleared her exam with an outstanding result, it is an extremely inspiring moment for all of us to witness, how her sheer determination and will-power enabled her to continue pursuing her ambition. We are glad that with our conscious effort we were able to give her a second chance at life.” – added Dr. Bhattad.

Thanking the doctors for providing the life-saving treatment to his daughter, Mr. Srinivas, Sushma’s father said – “Sushma used to read while I used to hold her favorite books during her treatment at the hospital. Her books were the only source of distraction for her that made her forget her pain. Even during times of extreme pain and agony, she did not let go of her ambition and her willingness to learn. I will always be in debt to the doctors at Aster CMI hospital for saving my child’s life and enabling her to continue chasing her dreams.”

Speaking about her success Sushma said, “I have always dreamt of becoming a lecturer one day and I am grateful to Aster CMI doctors who saved my life and have ensured that one day I am able to turn my dream into a reality. It is due to the constant support from my parents and doctors that motivated me to prepare for my exams and resume normal life.”

Also Read: ONLY 1 IN 10 PEOPLE WITH RARE DISEASES RECEIVE TARGETED TREATMENT IN INDIA

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Bangalore, August 14, 2020:  While everyone in the healthcare industry is currently focused on how to cure COVID -19 or find its vaccine, instances of primary immunodeficiency diseases are currently going unchecked and under-diagnosed. The current pandemic has now more than ever made it crucial for stakeholders in the healthcare industry to invest in the understanding of Immunology as many children continue to suffer immune deficiencies and are possibly,at an increased risk of developing severe COVID illness. Keeping this in the view, Aster CMI Hospital, a leading healthcare provider in the country has launched a book, titled, “Primary Immune deficiencies Made Simple.”

What are Primary immunodeficiency diseases (PIDD)?:

The book has been authored by Dr. Sagar Bhattad, Consultant – Paediatric Immunology and Rheumatology, Aster CMI Hospital to create awareness about these diseases amongst doctors and the general public at large. Primary immunodeficiency diseases (PIDD) are a group of more than 400 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. In these diseases, children are born with a problem/deficiency in the white cells. White blood cells are the fighters in our bodies. As these white cells are missing or not functioning normally, these children and adults are at risk for severe, persistent, recurrent, and unusual infections. Many of these children get hospitalized several times and some die even before getting the appropriate diagnosis.

Currently, 1 in 1000 individuals across the globe and possibly, more than 10,000 individuals in Bangalore, suffer from a problem in their immune system and are unable to fight infections in a normal way. While not contagious, these diseases are caused by hereditary or genetic defects, and, although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. These diseases are currently found to be more prevalent among the children and many recent findings from various experts have suggested that this is only the tip of the iceberg as lack of awareness, knowledge and training on these genetic diseases among the common people as well as the medical fraternity has created a huge gap in the detection of these diseases.

The book also gives a clinical approach to the readers:

With this handbook, the doctor has aimed to simplify the subject for the medical fraternity and increase the awareness of genetic diseases among the common people to further enable them to provide early diagnosis and the right treatment to children suffering from the deadly ailment. The book also throws light on the various ways and measures required to diagnose immune deficiency in patients and highlights how the understanding of family history, age-appropriate norms for immunological tests and types of blood samples that must be asked for is important for practitioners to correctly diagnose these rare diseases. Physicians can refer to this book and can make important decisions in a short span of time. The book also gives a clinical approach to the readers and discusses real-life cases to make diagnosing these conditions very easy for a practitioner even in a remote village or town.

Speaking on the launch of the book, Dr. Sagar Bhattad, Consultant – Paediatric Immunology and Rheumatology, Aster CMI Hospital and the author of the book, said – “Currently, there is minimal or no training provided on these diseases in medical schooling (MBBS, MD, DNB). Hence, doctors across the country may not be prepared to diagnose these diseases. This was the thought which prompted me to write a book on this topic and reduce the knowledge gap persisting among the practitioners with regards to the treatment of this disease. We have seen many families wherein multiple children have died before the index case gets diagnosed!

In serious immune deficiencies (eg: Severe Combined Immune Deficiency), the mortality is 100% in the absence of treatment. Today, many children and adults continue to suffer, not being diagnosed with the underlying immune deficiency. They often would be visiting many physicians, gastroenterologists, and pulmonologists. Here, they would be treated for the infections (lung/gut, etc), but the core problem remains undiagnosed. Therefore, it is time that we raise awareness and provide the right knowledge on PIDD to the medical fraternity and to the people of the country so that they don’t remain unchecked and gain maximum recovery rate.”

Over the last 2-3 years,Department of Pediatric Immunology at Aster CMI hospital has been regularly conducting CME and workshops to train the doctors on these diseases. We have conducted more than 30 such CMEs and trained over 1500 doctors across South India. We also provided free immunoglobulin infusions for a year for some of our patients under Aster@30 initiative. The government is also involved actively and is providing free immunoglobulin infusions to many of our PID patients. We are constantly working to create greater awareness for this underlying condition.” he further added.

Lack of time is a major challenge that most practitioners, physicians and medical students face and due to which they are unable to read and cope up with voluminous books published by foreign authors and remain unaware of such rare diseases. Therefore, this 170 paged-book gives a concise read on immunology, providing the right amount of information on these diseases in a crisp and simple manner. Busy pediatricians and medical students who may find it challenging to read lengthy texts on Immunology can make use of this book and can use it as a ready reckoner. 

Also Read : RARE DISEASE-RIGHT TO HOPE

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