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The Jenna Lowe legacy continues to create real positive change in South Africa

Jenna Lowe was an incredible South African who inspired a nation & created real change. And her parents and her community continue to do so, in her honour.

 

It took 2 years before she was accurately diagnosed with Pulmonary Hypertension (PH), it was an exhausting and agonizing experience for Jenna Lowe and her family but after Jenna passed away, her parents vowed to raise awareness for Pulmonary Hypertension in South Africa and continue Jenna’s legacy through her trust.

Pulmonary Hypertension (PH) is a rare, life- threatening disease that is often misdiagnosed leading to a delay in diagnosis up to 2-3 years. Most patients have a severe form by the time clinicians identify it. An accurate early diagnosis is vital to develop a successful treatment plan to prolong the patient’s life.

State and Private PH patients in Cape Town now have hope for improved treatment with access to a specialist PH treatment clinic at Groote Schuur Hospital, set up and funded by the Jenna Lowe Trust (JLT) in collaboration with Pulmonologist Dr Greg Symons. & Dr. Greg Calligaro.

The Groote Schuur Hospital Pulmonary Hypertension Clinic (GSH PHC) was established in 2015, following the untimely death of Jenna Lowe, a young woman who suffered from the disease. Despite having to cope with the devastating symptoms of her rare disease.

Jenna seeking to make a positive difference for all PH patients, rallied her parents, their networks and resources to increase awareness of PH and improve patient diagnosis in the public domain as well as within the medical fraternity in South Africa.

In doing so, she brought to light the enormous need for a specialist clinic or treatment centre for patients like her.

“It is incredibly rewarding to be a part of Jenna’s legacy. She brought the critical need for a tertiary specialist clinic for PH into focus. With the support of the Divisions of Pulmonology, Cardiology and the Divisions of Pharmacology, the GSH PHC has been running successfully for almost 2 years now.”

“We provide hope, support and treatment to the patients we treat here in the Cape. And with the crucial financial and resource backing of the Jenna Lowe Trust, we have most certainly raised the level of PH health care in the country.”, explains Dr. Greg Symons

The progressive nature of this disease means that an individual may experience only mild symptoms at first, but will eventually require treatment and medical care to maintain a normal lifestyle.

Through regular engagement with medical specialists around the globe and support from the Jenna Lowe Trust, the GSH PHC is able to keep up-to-date with developments in patient treatment and carry out the costly diagnostic testing on patients and with the accurate diagnosis, the clinicians are able to improve the quality of life, exercise capacity and survival of these PH patients.

Gabi Lowe, Jenna’s mother and co-founder of the JLT reveals “Jenna’s PH diagnosis was overwhelming, especially when we realised that so little is known about the disease. We were shocked, confused and frightened – we had to cope daily with whatever the disease threw at us.”

“We vowed that after our experience with Jenna’s disease that things had to change; PH patients, their families, their friends and healthcare professionals needed support to make this disease manageable and improve healthcare around it. We knew that driving awareness of this underdiagnosed disease for future patients was vital to change the landscape for other patients.”

The GSH PHC undoubtedly provides relief for the PH patients that it currently treats, and its team plans to expand these clinic services to Kwa-Zulu Natal and Gauteng, also to start an African PH Patient Database to understand the disease better locally, as well as lobby pharmaceutical companies to make the medicine more affordable for all.

The clinic currently treats 68 patients and provides hope, treatment and counselling for PH patients. This is the first of its kind in the country and is pioneering the way to understand this rare disease in the context of Sub-Saharan Africa.

“There are some amazing success stories to share like that of Bridget Nkonyeni who was sent down to us by Albert Lethuli hospital in Kwazulu Natal as she needed a Thromdectomy, as a result of her PH.  The operation was such a major success, she is no longer on oxygen!”

“The Jenna Lowe Trust paid and arranged for Helen Williams (the PH Clinic nurse) to take her out of Groote Schuur on Sunday; we needed to buy her clothes (she only had her hospital gown as was send directly from the hospital) and Helen took her on a stunning full day outing around Cape Town.”

To learn more about the Jenna Lowe Trust, click here.


Sources: Jenna Lowe Trust
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