“I’m worried about being able to afford to live with PH”
Student Shani Fernando is 26 years and lives in Croydon. She was diagnosed with PH as a baby.
“As a student who will be graduating soon, I’m worried about the prospects of getting a job and being able to afford to live with PH.
Currently, I receive disability allowance, which helps me afford to buy bisoprolol. My mum has asthma and doesn’t have to pay for any of her medication – I don’t think it’s fair. My other drugs tadalifil and ambrisantan are paid for and delivered through homecare medicine services.
I fear that the government will take my disability allowance away, and the pain of applying and then reapplying for financial help scares me. I’m also worried about finding an employer that understands my condition and offers flexible working hours if I need them. But for the moment, I’m trying to stay positive.
Over the last six years, I have kept my brain active by studying full-time for a degree in aerospace engineering at Kingston University London. It has taken me much longer than the average undergraduate due to my PH and fitting studying around my treatment. The course has also been incredibly intense, which led me to be admitted to hospital for stress. At that point, I knew I needed to listen to my body and not overdo it and am grateful to the university for being so understanding.
I truly believe that if your mental health is suffering, your physical health will be affected too. Luckily, I have a great support network. Living with a rare disease is difficult and I try to surround myself with positive people.”