Marlene’s foundation encourages genetic cancer testing

Van Staden, former Mayor of the Modimolle-Mookgophong Municipality, passed away in June after breast cancer was diagnosed a year before. She tested positive for a mutation on the BRCA-1 gene, a hereditary condition that affected several of her family members.

After the 42-year-old Van Staden’s untimely death, her family decided that there was a need to create awareness around this mutation. Many people know that cancer is prevalent in their families, but do not realize that genetic testing can give them answers and ensure that they act in time to prevent serious illness and death.

“We want the term previvor to become as common as a survivor. Previvor means someone has been proactive in their health decisions,” explained Marietjie Jacobs, Marlene’s aunt, who was also affected by the gene mutation.

Actress Angelina Jolie is a celebrity previvor, who after testing positive for the BRCA gene mutation, opted to have a hysterectomy and mastectomy to ensure that she did not develop the same cancer that led to her mother’s death.

“People are afraid to talk about cancer and how it affected them or their families. We want to encourage them to be open and discuss it,” said Jacobs.

Dr. Marthinus Heystek, another family member, spoke on the importance of testing if there is a family history of cancer, for the sake of one’s children.

“At first I did not see the need to get tested, but realised that I have a daughter and two granddaughters who will be affected. If I’m clear, they will not be impacted, but if I tested positive, they need to know of their increased risk to develop cancer.”

Testing positive for the BRCA-1 mutation increases a person’s risk by 60% to 80% for some types of cancer.

“Men are not safe — they can also develop breast cancer,” warned Heystek.

He explained that creating awareness in the medical community is important as genetic testing is relatively new and some doctors had no training regarding this.

Julie Malan, an experienced genetic counselor at Ampath and the Femina Clinic in Pretoria, spoke on the importance of assisting families if a member tested positive.

“A positive test result affects everyone. Those who have a personal history of breast cancer, developed pre-menopausal cancer before the age of 45, or had more than one generation with breast or ovarian cancer, should consider testing,” she advised.

The foundation aims to create awareness regarding genetic testing for BRCA mutations, provide both financial and emotional support to those who need to test and support breast cancer patients as well as bereaved children and family members of victims. They also aim to create a multi-disciplinary team of experts to support families with inherited harmful variants of the BRCA-1 or BRCA-2 genes.

The foundation is a non-profit organization and will also be registered as a public benefit organization. It will be able to provide donors with a Section 18 A tax certificate.

The foundation has set its first goal of collecting R250 000 and this be allocated towards genetic testing.

For more information, phone tel. 083 287 4144 or visit the foundation’s website at www.angelm.org.za(.)