Support group started by patient aims to help more people

Mr Mohd Amin Haji S.S. Mubaruk (left), 51, suffers from a type of high blood pressure in the lungs known as pulmonary arterial hypertension. He and his friend David Lim, a 33-year-old business development manager, are committee members of a support g
Mr Mohd Amin Haji S.S. Mubaruk (left), 51, suffers from a type of high blood pressure in the lungs known as pulmonary arterial hypertension. He and his friend David Lim, a 33-year-old business development manager, are committee members of a support group which will be called Pulmonary Hypertension Singapore once they became a registered organisation. PHOTO: MOHD AMIN BIN HAJI S.S. MUBARUK
Mr Mohd Amin Haji S.S. Mubaruk, 51, helped organise a talk in April this year where patients and their caregivers learn about Opsumit, the latest drug for pulmonary arterial hypertension patients to delay disease progression.
Mr Mohd Amin Haji S.S. Mubaruk, 51, helped organise a talk in April this year where patients and their caregivers learn about Opsumit, the latest drug for pulmonary arterial hypertension patients to delay disease progression.PHOTO: MOHD AMIN BIN HAJI S.S. MUBARUK

Having blue skin may look cool for the characters in science-fiction animated film Avatar. But for people with high blood pressure in the lungs, a blue-tinged complexion spells serious trouble.

The condition, called pulmonary hypertension (PH), can result in a lack of oxygen, which turns their lips or skin blue.

At the age of 39, Mr Mohd Amin Haji Mubaruk was diagnosed with a type of pulmonary hypertension in 2003, after complaining of chest pain. As a result of the increased blood pressure in the small arteries of his lungs (pulmonary arteries), he felt breathless after climbing just two to three flights of stairs. Even walking on flat ground for a few metres made him "desperate for air", he said. The discomfort was made worse by swelling in his legs and abdomen.

Shortly after his diagnosis, Mr Amin wondered if there were others like him, and set up the PH Patient Support Group in 2006.

A support group can be helpful, given that with good medical therapy, more than eight in 10 are expected to live for over five years.

Without treatment, only three in 10 pulmonary arterial hypertension patients like him will live up to five years, showed a study published in April.

In the early years of the support group, Mr Amin had to single-handedly organise health talks, which attracted up to 30 patients and their caregivers each time.

Yet he could organise them only annually or every two years.

Now, the 51-year-old, who is unemployed, is one of five committee members who have their sights on growing the group and expanding its activities. The members are in the midst of registering the group with the Accounting and Corporate Regulatory Authority to be a public company limited by guarantee, which means it will be a non- profit organisation that exists in its own right in the eyes of the law.

As a registered entity which will be called Pulmonary Hypertension Singapore, the group, Mr Amin said, will be able to organise events to raise funds from non-members and even corporations, solicit online donations and work directly with pharmaceutical firms.

Their outreach efforts will include a website, presence on social media platforms and a task force to reach out to newly diagnosed patients, said Mr David Lim, a 33-year-old business development manager who is the only non-patient on the committee.

These patients can gain insight from long-time sufferers of the condition, such as Mr Amin, who has had the condition for 12 years.

Today, he relies on up to 10 types of medication to reduce the workload of his heart and improve blood flow in his lung vessels. He has two- hour-long exercise sessions at the hospital, thrice a week, with a physiotherapist. He knows how keeping fit has helped him to breathe better, and he has urged a younger patient, who used to require supplemental oxygen, to do likewise.

Mr Lim said the group also has plans to build a patient database. This way, it can organise activities more regularly, he added.

A version of this article appeared in the print edition of The Straits Times on December 22, 2015, with the headline 'Support group started by patient aims to help more people'. Print Edition | Subscribe