“It’s because of patients like Jenna that we’ve been able to improve our treatment for things like pulmonary hypertension”
The Jenna Lowe Pulmonary Hypertension (PH) clinic is a specialist clinic at Groote Schuur Hospital in Cape Town, South Africa, that was started shortly after her death because of the awareness she had created around PH. It is named after Jenna to honour the large contribution she made to the landscape of Pulmonary Hypertension in SA.
Discovering that you have a rare disease can be daunting and scary,
and one of the best ways to counteract fear with knowledge and
facts. Although reading up on your illness may be feel overwhelming
at first it really is important to know as much as you can in order
to empower yourself to ask the right questions, demand the right
care and find the right treatments.
There is so much misinformation on the internet, be sure to use
credible resources such as:
Hilary trained as a nurse at Groote Schuur and Mowbray Maternity Hospitals. Her nursing experience includes working in Neonatal ICU for more than 20 years, where she helped mothers to understand about their premature or sick new-born babies' diagnoses and ensure the best care for their babies. Her subsequent experience includes Quality Management and teaching postgraduate nursing students for eight years. During Hilary's career she developed a passion for 'CARE' in nursing. Her new role at the Jenna Lowe Trust (Hilary joined us in 2021) as Patient Liaison and Support in the Pulmonary Hypertension Clinic is about helping, caring and supporting patients with Pulmonary Hypertension. We have equipment that we loan to our patients to help them to be more comfortable and offer them better quality of life. We organise and hold support groups and interactive educational meetings, including patients families, who will benefit from better understanding the condition. And we offer help with other necessities that make the patients' lives easier, knowing that the philosophy of the Trust is to honour the exceptional person who Jenna was and to ensure that her legacy lives on in our work.
"It's a pleasure working for The Jenna Lowe Trust and knowing that the
work we do really is a making a difference to people's lives. Recently
a patient was referred to the PH clinic for help as they were not
receiving adequate medication. Our doctors advocated for her and were
able to successfully negotiate access to appropriate medications,
which has stabilised the patient and drastically improved her
lifestyle. Access to treatments is not easy in South Africa, and not
always possible, so it is a real win when we are able to get it right,
such as with another PH patient who was often off sick from work,
battling to stay well enough to continue working despite having PH.
After referral to the PH clinic, the patients' medications were
carefully adjusted and this made a big difference, resulting in less
time off sick and the very grateful patient not losing their job!
The Jenna Lowe Trust also purchases, services and looks after aids
such as mobility devices and portable oxygen machines that we loan to
our PH Clinic patients to assist them. These can be really
life-changing for patients enabling them to go on outings with their
family, visit friends, or go shopping, all things that they otherwise
would not be able to do. It makes a marked difference to their lives."
Nurse Hilary Barlow Patient Liaison and Support for the Clinic
hilbar@mweb.co.za
As Groote Schuur is a Government Hospital, the correct process should be
followed for referral to the PH clinic at Groote Schuur Hospital. A
patient who identifies that their symptoms may be considered to be PH
should visit their GP or local clinic, where a doctor will assess them.
If the doctor’s assessment indicates that the patient needs further
investigations, they will be referred to a Hospital for more detailed
assessment. After this has been done, if appropriate, the patient will
be referred to Groote Schuur’s PH clinic for assessment and management.
Ensure that the correct process is followed as far as referral of
patients is concerned. Don’t try to ‘jump the queue’ as patients must be
referred for care through the correct channels.
Patients should attend the clinic on the date of their appointment. If
there is a problem then they should phone the clinic to change the
appointment a few days before the appointment.
Help us support and improve the lives of PH patients at the clinic by DONATING HERE. Help us raise awareness of this little-known illness by sharing information on PH and the clinic to help people get diagnosed earlier! Go to the HOW CAN I HELP page to see the other ways in which you can support the Jenna Lowe trust.
Registrars are qualified doctors who are specialising in a certain field of Medicine. The registrars in the PH clinic may be doctors specialising to become physicians. There may also be qualified physicians who are further specialising to become Pulmonologists – a specialist doctor who cares for patients with problems with their respiratory system. These doctors are studying through The University of Cape Town and are taught by the consultants in the wards and in the clinic. While specialising, the doctors must undertake research and publish their findings in medical journals and conferences.
Did you know that Groote Schuur Hospital is the only Government Hospital
in South Africa where lung transplants are done? This too began a few
years after’s Jenna’s death and extensive awareness campaign for organ
donation and transplant.
Patients who have had Covid can develop PH. It may also develop in
patients who are HIV positive.
Even though SA is the home of the first ever heart transplant less that 0.3% of our population are organ donors. On any one given day there are at least 4,300 people awaiting an organ transplant. It is quick, easy and costs nothing to become a donor. Your organs could save up to seven lives when you die.
Did you know that over 7,000 different rare diseases have been identified to date, directly affecting the daily life of more than 350 million people worldwide? The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Society of SA has become a crucial source of information, experience and resources for families affected by rare diseases in South Africa.
Pulmonary Hypertension is a progressive, degenerative disease caused by the narrowing or tightening of the veins and arteries in the lungs. Common early symptoms of PH include: Breathlessness (particularly during physical activity); excessive fatigue; dizziness; fainting; peripheral oedema and chest pain (particularly during physical activity).