Thalassaemia patients in dire straits over low blood supply

(Seated, left to right) Lee, Fazalena, Francis and Khoo after the First National Conference for Thalassemic and Parents press conference yesterday.

PENAMPANG: Some 1,800 Thalassaemia patients in Sabah have to deal with the critical issue of low supply in blood banks, said Federation of Malaysian Thalassaemia Societies (FMTS) deputy president and Sabah Thalassaemia Society president Francis Mujim.

Francis said the figures were not official, but the problem of low blood supply had created a real threat to patients’s safety as they were getting discharged with low haemoglobin (hb) levels from hospitals.

He added that discharged patients, in urban and rural Sabah with low hb, such as level five to six, are weak, get tired easily, and cannot walk long distances.

Thalassaemics, a group with inherited conditions that cause a person to produce either none or too little haemoglobin that is used by red blood cells to carry oxygen to organs in the body, face other health threats such as cardiac arrests.

“That’s why the critical problem for Thalassaemia patients now is the blood supply. To get this blood supply, we have been working with a few NGOs and some cooperation with other departments, but we still cannot cope with the blood needs of the state.

“We need more or less 1,700 to 1,800 pints of blood every month for Thalassaemia, not inclusive of other patients,” he said during the First National Conference for Thalassemic and Parents press conference held here yesterday.

“We can understand the problem but what we ask through this conference is to empower, provide more information to patients so they can communicate to doctors the repercussions should they be discharged with hb 6 (for example),” he explained.

He stressed that there is a clinical guideline outlining the management of Thalassaemia, and patients should not be allowed to go home with low levels of hb.

He added that as of August 2018, the number of Thalassaemics in Malaysia was 7,848, 55% of which are under the age of 20.

Francis said since Sabah has the highest number of Thalassaemia majors, the conference is held to create a more informed Thalassaemic community.

The conference themed ‘Empowerment Through Knowledge’, targeted to create knowledgeable patients and parents, is expected to be held on September 14 and 15 this year in Sabah. However, FMTS president Khoo Swee Hong said the location has not been determined yet due to budget.

Khoo said  the conference also aims to standardize the treatment of Thalassaemics in every Malaysian state, amongst others.

Among the targeted attendees are Thalassaemics, their families and doctors and nurses providing medical management to the patients. Exhibition booths will also be held to showcase the newest administration methods on chelation as well as other management needs of Thalassaemia.

Khoo said among the FMTS fund-raising events with Penang’s Friends of Goodwill for the conference are the Silent Art Auction, June 8 to July 6 at Penang Pac, Straits Quay, Tanjong Tokong in Penang, and the Charity Food Fair on August 18 at a yet to be confirmed venue.

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