Pulmonary Alveolar Proteinosis affects one in 10 lakh people.

This Andhra woman has a rare disease and her doctor is crowdfunding to save her
news News Friday, March 31, 2017 - 18:53

A doctor from Andhra, moved by the plight of one of his patients, has started an online petition to crowdfund money for the latter's treatment.

35-year-old Lakshmi, who is presently undergoing treatment at the Sunrise Hospital in Kakinada, is suffering from a rare lung disorder called 'Pulmonary Alveolar Proteinosis'.

Lakshmi was admitted to the hospital on March 17, and was diagnosed with the disease on March 27.

Speaking to TNM, Dr Praveen from Sunrise Hospital says that this is a rare disease that only affects one in 10 lakh people.

"To explain it in simple terms, the lung gets filled with hard proteinaceous material  - which has the consistency of a substance like curd. This material, blocks the transfer of oxygen from the lungs to the blood vessels," he says.

"Lakshmi's husband works in a shop, and gets a salary of Rs 10,000 per month. The relatives of the patient visited several hospitals over the past one year, which depleted their resources. However, we can't blame the doctors, as it’s a very tough disease to diagnose," he adds.

Presently, Praveen says that Lakshmi has been intubated and kept on a ventilator.

The treatment includes ‘Whole Lung Lavage’, which involves washing out the protein material that has gathered on the lung everyday.

"It is a five to six hour procedure, and we have been doing it for two days now. On Wednesday we were doing it till midnight," says Praveen.

Besides that, Praveen says that Lakshmi will need a 'GM-CSF inhalational therapy' and an injectable medicine called Rituximab (1000mg).

“GM-CSF costs approximately Rs 2,000 per day, and has to be administered for 15 days in a month for three months, and the injection costs Rs 35,000, after getting a nearly 50% discount from the pharma companies. This has to be given every 15 days, thereby bringing the treatment cost to around Rs 70,000 a month," Praveen explains.

Also, as this is a rare disease, it is not covered under government schemes. Now, here is where it gets tricky.

"To be very frank, I can't guarantee that the patient will live, as the medical procedures are complex. However, if she survives the first few days and responds well to treatment, she will be walking home in three months. We have to take that risk," Praveen says.

He adds that Lakshmi has been showing some improvement in the last two days.

When asked about what made him start the online crowdfunding campaign, Praveen says that there are three reasons.

"The first is empathy. She is a 35-year-old with two children," he says. "The second reason is that it is a very academically interesting case, as it is rare. Several students at the hospital are also learning from it."

"Thirdly, it’s not an incurable disease. If we think positive, and put our best efforts in, we could succeed. It would be one of the best feelings in the world if we could make her walk home," Praveen says.

Praveen says that his hospital authorities, including his director, have been supportive of the case and are helping the patient out with the Whole Lung Lavage.

"We need help only for buying inhalational and injectable medicines," he adds.

The crowdfunding campaign, along with Praveen's contact details, and means to contribute, can be found here.

 

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