Wednesday, 18 August, 2010

Rare diseases get real support



Dr Heitner, activist for sufferers of a rare disorder with Terry Volkwyn and Penny Stein, project manager for the Dis-Chem Foundation.

The Dis-Chem Foundation showed 702 listeners how to Lead SA this morning when they committed R1,5 Million to sufferers of a rare group of diseases.

It was the latest of a number of Random Act of Kindness which Talk Radio 702 and the Dis-Chem Foundation have partnered on to make a difference in the lives of others.

Talk Radio 702 host, Redi Direko spoke to specialist paediatrician, Dr Rene Heitner on her weekly Healthy Lifestyle feature. Heitner is a pioneer in the field of Lysosomal Storage Disorders (LSDs) which form a group of very rare diseases classified as orphan diseases. If left untreated, LSDs are crippling and ultimately, fatal.

Research into the treatment of these orphan diseases is very new, and treatment is still extremely expensive but when treated, patients can be cured quite simply.

“I can’t tolerate to see a curable disease left untreated and have made this my mission,” explained Dr Heitner, who has managed to successfully lobby for medical aids to pay for insured patients to receive treatment for LSDs.

The outlook for uninsured patients is not nearly as bright as the Charlotte Maxeke Academic Hospital is the only one in the country currently treating LSDs. Recently, the hospital notified Dr Heitner that they have no capacity for new patients.

He plans to start a national fund to cover treatment for these patients and the Dis-Chem Foundation joined Redi on her show to offer Dr Heitner a financial kick to get the fund going.

“We are totally inspired by you,” said Penny Stein, project manager for the Dis-Chem Foundation. “We are moved by your passion and commitment so in a the Dis-Chem Foundation is proud to offer R500 000 per year for the next three years to deal with these ‘treatable diseases’”.

Dr Heitner was overwhelmed by this generous contribution and promised to use it to treat the 44 uninsured patients who have been diagnosed with LSDs but are currently not receiving treatment.

“Lead SA is all about making a difference and the Dis-Chem Foundation has made a huge difference to a number of people today,” said Redi Direko, urging listeners to follow their example and make a difference in their own environment.

For more information on the Dis-Chem Foundation and their great work, visit www.dischem.co.za
To learn more about Lead SA visit www.leadsa.co.za

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