Those who are ailing and their families interact with other patients
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Hyderabad: Online support groups for rare diseases is proving to be a boon for patients of pulmonary fibrosis, psoriasis, muscular dystrophy, lupus, systemic sclerosis and many others where the information required to take care of the patient is shared.
With no ground support groups for these patients as the disease is very rare, many patients and their care givers are dependent on doctors who are not able to spare time to deal with the minute queries and constant ailments that the patient suffers from.
Sunil Thakre, a software engineer whose eight-year-old child suffers from muscular dystrophy explained, “We did a battery of tests and after every treatment there was a round of physiotherapy done so that we know exactly how the progress was. While the doctors explained, there were times when we wanted to know more. Discuss our small issues and understand how to deal with it. My wife found this online support group and we were shocked to find the various stages in which care givers were dealing with the disease. For once, we felt that we were in a place where many of them were coping with the problem and we must not give up. That motivation came from the various feeds and we found that the support was not only for the patient but also for us in taking care of the child.”
Similar is the case of pulmonary fibrosis (PF) which is the scarring of the lungs. It is a family of 200 different lung diseases which look very much alike. In some kinds of PF, there is no scarring of the lung and that makes it diagnosis very complicated. Till 2010, there was no targeted therapy for PF available in India.
Dr N. Ravindra, senior doctor at Global Hospitals explained, “Even after diagnosis of PF, there was no treatment available in 2010 but now the scene has changed and there are approved drugs available at affordable cost. Also, doctors are able to understand the disease and actively treat it but there is very little awareness about this disease.”
But when it comes to support for the patients, there is still a huge gap and for that reason many of them opt for online help and support.
Gita Ramaswamy, who is seeking online support explained, “The global group discusses the modalities of the disease, on-going research, likely medicines and side-effects. The group has helped to understand how to cope with the oxygen therapy, exercise regime and also daily living. For the care givers, it comes as a relief as it helps to understand and deal with the disease better rather than call the doctor every time.”
In PF patients, cough has been one of the most persistent complaints. Dr Prashant Gandhi explained, “In some patients, when they talk for longer periods, they are found to cough constantly. There is also extreme fatigue in these patients and their quality of life is greatly affected. It is a slow, worsening disease but now there is more information coming in to deal with it.”
Psoriasis is an immune-mediated disease which affects the skin and joints especially elbows and knees. It varies in severity from minor patches to extensive or complete skin coverage. The treatment for it is very costly and many of them suffer from severe pain, skin rashes and also other multiple problems.
The support groups online have a lot of patients and their relatives too who are willing to share the experiences in details. Like the use of vitamin D tablets, creams, ointments etc.
Help online, offline comes as a big relief
Support groups both online and offline have proved to be a breather for patients who understand the disease better and also learn to cope with it.
The groups constitute of patients and their relatives who gather and discuss the details of the ailments and also methods to cope with it. They are largely formed with the help of doctors who find that interaction of patients with each other gives them strength and also makes them not feel isolated in their pain or dealing with the disease.
Dr Venkat Narayan who runs the Hemophilia Society Hyderabad explained, “The patients are able to find a solution to their problems and they know where they can source blood for the patients. More than doctors, it is the interaction of patients and their care givers.”
Manish Gupta, a software engineer said, “We have been trying to understand the treatment method for my sister who is suffering from lupus. While the doctor has given a set of guidelines but there are many doubts. With this group, we have to just ping in our queries and we get the reply.”
( Source : deccan chronicle )
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