A mother from Hitchin whose daughter lives with a rare medical condition is backing a national awareness campaign that starts today, to help more people understand the seriousness of the condition.
Lisa Lathane wants to spread the word about pulmonary hypertension, a condition which currently cannot be cured that increases blood pressure in blood vessels that supply the lungs.
Her 12-year-old daughter Robyn, who attends the Priory School, is one of just 300 children in the UK who suffer with pulmonary hypertension and is currently on an urgent waiting list to receive a heart transplant.
Robyn has lived with heart problems since birth, leading her to be diagnosed with pulmonary hypertension at the age of three.
As the left side of Robyn’s heart does not pump properly, there is increased pressures in her lungs, which will eventually cause the right side of her heart to fail. A transplant is her only option.
Robyn has been waiting for her heart transplant since October 2018 and in March this year she was moved onto the ‘urgent’ list.
Lisa said: “It’s hard for people to understand how poorly Robyn is because PH is an invisible illness, and she also does her best to hide how she feels.
“To look at her, you wouldn’t think anything was wrong with her. But she gets very breathless and very tired or she gets cross with the condition because it means she can’t be like her friends and her sister.”
Lisa and her husband Ross are sharing the family’s story in support of Pulmonary Hypertension Awareness Week, which runs from November 2 to November 8.
The national campaign has been organised by the Pulmonary Hypertension Association, a UK-wide charity that supports adults and children with the condition.
Lisa added: “I want to raise awareness because even though this condition is rare, it can strike anyone.
“Robyn developed it because of a pre-existing condition but there are many people who develop it out of nowhere. It could happen to anyone and can take a long time to diagnose.
“It’s hard to explain to people what PH is. Many people think it’s just high blood pressure, but it’s so much more dangerous than that.
“Knowing that someone has to die for my daughter to have her operation is really hard.
“It feels really unfair to be wishing for the call, when you know that getting it means another family will be going through the worst time.
“The only way I can deal with it is knowing that person will be losing their life regardless, and for Robyn to get their heart will be a positive thing to come from something so terrible.
“But the worry of the call never coming plays on my mind all of the time. It’s in the lap of the gods, and that’s really hard.”
For more information on the Pumonary Hypertension Association and the support they offer, visit www.pha.org.
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