November is Rare Diseases Awareness month which includes Pulmonary Hypertension Awareness. Matthew Legemaate (16), a grade 9 pupil at Hillcrest High School who suffers from PH, got his class to help him raise awareness about the disease.
Class 9S, who are very supportive of Matthew, painted their lips blue, one of the later symptoms of PH and took part in a photo shoot to highlight PH awareness.
Matthew was diagnosed with PH three years ago, having already undergone five open heart surgeries for a heart condition, starting at 36 hours of age. At the age of 10 he was diagnosed with chronic obstructive pulmonary disease (COPD), which has now progressed to PH. Matthew is currently on the transplant list awaiting a heart and bi-lateral lung transplant.
Janet Legemaate, Matthew’s mother, said it was important to highlight PH as it can affect anyone.
“Pulmonary Hypertension is a rare potentially fatal lung disease that has no boundaries. No matter who you, you are not immune. PH can strike any age, any gender and any race.”
If caught early enough, PH is treatable but is often misdiagnosed as Asthma, congestive heart failure or COPD as they have similar symptoms and in its early stages may not be noticeable for months or years.
“PH is often known as the silent killer. If caught early on it can be treated, however the reality is that it is often misdiagnosed or diagnosed late when a lung transplant is the only option. Many of the life saving medicines to treat PH are not available in South Africa,” said Janet.
PH symptoms include: shortness of breath, initially while exercising and eventually while at rest; fatigue; dizziness or fainting spells; chest pressure or pain; swelling in arms, legs, ankles and abdomen; a racing heartbeat or increased awareness of your heart rate; dry cough; a bluish tinge to lips and skin.
“We need to create awareness of PH to improve the care and outcome of patients diagnosed as having PH. Although Matthew has multiple issues which all contribute to his need for a transplant, PH has caused him to deteriorate much quicker. I would encourage people who display any of the symptoms listed to approach their doctor about PH. The earlier a correct diagnosis is made, the more effective treatment can be and ultimately may lead to a fuller life.”
“Despite all the challenges he has had over the years Matthew does not give up. His positive attitude is often what causes us to remain positive.”
For more information on PH visit the PH website: www.phsa.co.za.
“I would also like to encourage people to sign up as organ donors as there are presently 4300 on the waiting list for different organs and only 0.2 percent of the SA population registered as organ donors.”
The organ donor website is www.odf.co.za.
