2010 Award Winner Profile
Compiled by Elzarie Devenish, South Africa
First PH Retreat South Africa Makes Dreams Come True
With support from a Tom Lantos Award for Innovation in Community Service grant, PHA South Africa proudly hosted its first PH Retreat on October 30-31, 2010. “It was an historic moment for persons living with pulmonary hypertension,” says Elzarie Devenish, grant winner and retreat planner. Twenty-nine medical staff, PH patients and family members attended the retreat, the first of its kind in South Africa.
PHA South Africa Puckers Up 4 PH
The retreat aimed to reduce patient isolation, discuss advances in PH and the medical situation in South Africa, launch the work of PHA South Africa and its support group, raise media awareness, and create an opportunity to monitor and evaluate needs. The program was comprised of PH patient stories and speakers from the PH medical field. The energy and enthusiasm of all the attendees was electric.
Denneys Niemandt, Chairperson of PHA South Africa, wrote before the retreat, “Now I know how Neil Armstrong and his team felt the day they landed on the moon: I cannot wait.” Dr. Paul Williams, guest speaker, acknowledged the value of the meeting, thanking the organizers for getting it right by involving the medical community with PH patients, a unique situation that has never happened before in South Africa. Dr. Freek Bester added that the energy created was wonderful.
Gerrie Booysen (pictured left) with
Leonique van der Walt. Gerrie
loaned his portable oxygen machine
to Leonique as she struggled to cope
without oxygen at the PH Retreat.
Mrs. Devenish gave a presentation on the Road to the Retreat, describing how PHA South Africa links internationally and what the group needs to do. Promotion and awareness-raising were key elements of the retreat. The local newspaper, Volksblad, ran two articles on the retreat, reaching more than 20,000 readers. SABC Radio interviewed Mrs. Devenish in Afrikaans and English about the outcomes of the retreat and broadcast the piece nationally. Mrs. Nicolene Muller launched the PuckerUp4PH awareness raising campaign in South Africa and the group painted their lips blue for PH, an activity that all joined in — from medical professionals to PH patients and their families.
L to R: PH patient Tylor Miller, Marion Koopman
and Carmen Miller sharing Tylor’s PH journey
at the retreat
The value of this retreat cannot be described in words; it gave individuals living with PH, their families and the medical community hope, direction and a way forward in South Africa. “Hope,” says Mrs. Theresa van der Walt, mother of 9-year-old PH patient Leonique, “that is what this retreat taught me. It meant so much sharing with people who understand what is going on, and lasting friendships were formed.”
This model can be replicated in any third world country for extending the reach of promotion and awareness of pulmonary hypertension. However, we would not be at this point without the Tom Lantos award, PHA and the international network of associations, and Gilead, sponsor of the Tom Lantos Awards program. As Mr. Nico Muller explains, “It was one of the best experiences in my life, thank you.”