Litigation executive Jess Wescott is 29 and lives near Brighton with her husband Liam. She was diagnosed with pulmonary hypertension at the age of 20 and wanted to share her story to show that everyone has different experiences of the disease.

“When I got diagnosed around nine years ago the thought of being 30 seemed really far away and I’m happy that my health has stayed the same and I’m so stable.

I was born with a hole in my heart and had surgery at the age of six to repair it, followed by check-ups every three or four years.

At one of these checkups, I was with my mum, and she mentioned that she had noticed me getting out of breath when going up the stairs.

They ran some tests and that’s how the PH was identified quite quickly. I was told it was from the damage that was caused by the hole in my heart before it was repaired, and that it had just taken a long time to show.  

I had no idea what PH was, and I didn’t understand the impact it could potentially have on my life.

When I was given my diagnosis, the doctor drew a diagram and explained that I shouldn’t have children. It was a shock.

I don’t remember much from those first few days, but I do know everything I read online about life expectancy was worrying me. I didn’t feel like the people in the stories I was reading about, so how could it be true?

I was in a bit of denial, because I’d always lived a really ‘normal’ life – going on girl’s holidays, travelling, hiking, swimming, and playing rounders at school. I never noticed there was anything wrong.

Once I started speaking to specialists, they explained everything properly and helped me understand that everyone is different when it comes to PH. They said they were hopeful my symptoms could be managed by medication, and I know I was lucky that it was picked up so quickly.

I take two types of medication and my symptoms are minimal; I just need a bit more time to rest and recover than other people. I’m okay when I’m actually doing things, but it can hit me afterwards.

I’ve been married to my husband for two years now. We got together about 12 months before I was diagnosed, and I remember having an awkward and uncomfortable chat about the doctor suggesting to me that I don’t have children.  

I haven’t ever been one of those girls who’s always said they can’t wait to be a mum, or that they can’t wait to be pregnant, but it was still tough to hear that I shouldn’t have a baby.

To have that decision taken away from me when I was so young was a massive shock.

I have since been referred to a specialist in London who deals with pregnancies in people with conditions like pulmonary hypertension, and they have told me that because I am so stable, it could still be an option.

It’s amazing to have the choice back, but I’m very aware that it wouldn’t be a straightforward pregnancy and Liam and I had already discussed the route of adoption, so that could still be a possibility.

I don’t think too much about the future. I’ve got quite a positive outlook on everything, and since being diagnosed with PH I definitely don’t take anything for granted. I just appreciate the smaller things in life, like being able to go for a walk. I appreciate my health a lot more, and what I’m able to do.”