A young woman has opened up about her experience living with a rare disease and frequent nosebleeds which left her feeling ’embarrassed’ and ‘sometimes wanting to give up’.
28-year-old Jessica Kiser from Baltimore, USA, has had hereditary haemorrhagic telangiectasia (HHT) her whole life but was formally diagnosed in May 2010 when her symptoms got exponentially worse.
A genetic disorder which affects blood vessels leaving them malformed or underdeveloped, HHT can also affect multiple organs and lead to anaemia as well as other health issues.
Both Jessica and her sister struggle with the condition which they saw their grandmother battle with during their childhood, they say they inherited the disease from the maternal side of their family.
This meant when Jessica started having regular and serious nosebleeds at the age of five, she thought they were ‘normal’ as she had watched her grandma have them.
Nosebleeds are a common symptom of HHT which also causes sufferers to have shortness of breath, fatigue, migraines, AVMs (malformed vessels and arteries in major organs) and telangiectasia (tiny veins which often form in clusters close to the skin that can then crack and bleed).
Speaking to UNILAD, Jessica explained how the symptoms affect her both physically and mentally leaving how feeling ‘tired’ and ‘weak’.
She said living with HHT has been a ‘rough’ ride so far:
One minute I would be talking with someone, then the next I would end up gushing blood from my nose and running to the bathroom. It’s understandably embarrassing and inconvenient, not to mention scary.
The nosebleeds make you tired, weak, and dizzy, along with the fatigue that already comes with the disease.
I’m fortunate enough not to have major issues with most of my organs like some with HHT can have. I’ve heard of patients that had to have parts of their lungs removed or had an embolisation done in their brain because of AVMs.
It is taxing at times on my mental health. I’ve often woken up in the middle of the night bleeding, got in the shower to wash the blood off and just sobbed.
I can tell you that bleeding seven or eight times a day, or having one long slow six-hour nosebleed, or having doctors tell you there is nothing left to try… sometimes you just want to give up. However, you can’t. You have to fight.
That’s the spirit, Jessica!
Jessica has had to head to hospital numerous times each month when her nosebleeds are particularly severe as the only option left is to have them packed, something she describes as ‘unpleasant, painful and downright annoying’.
Around August last year Jessica ended up with an extremely low blood count from all of the bleeding and was admitted for a blood transfusion.
In 2016 Jessica was also diagnosed with having pulmonary arterial hypertension (PAH), which can be a side effect of HHT and deadly if not treated quickly enough.
PAH causes extremely high blood pressure in the lungs by narrowing the arteries there and when doctors discovered it in Jessica, she already had advance heart failure.
Thankfully it was treated but after her blood transfusion doctors decided it was time to try ‘a more serious approach’ and so Jessica started receiving infusions of a chemotherapy like drug called Avastin every other week for 12 weeks.
Last month Jessica received her last infusion and although it has not cured her, there is currently no known cure for both of the diseases, she happily feels ‘much better’.
No longer anaemic with her bleeding greatly reduced, Jessica hopes the situation remains this way but knows the future is still unclear.
She explained:
I’m not cured unfortunately but I am doing so much better. I went from nosebleeds four to six hours a day, every day, to maybe having a few short bleeds a couple times a week.
I feel more full of life and happier. I’m not afraid to do things anymore. It truly changed my life for the better.
I still have the diseases but it’s more manageable. There is a possibility I’ll have to do all of this over again, should my nosebleeds get worse, but I’ll take the blessing I have for now.
I hope one day they find a cure.
While it is thought HHT affects around 1 in 5,000 people worldwide, Jessica explained to UNILAD it is often misunderstood, unrecognised and under-diagnosed.
In fact she told us only 10 per cent of people with the disease are actually diagnosed with it properly.
Because of this, Jessica shared her story on Reddit hoping to spread awareness and reach out to others with the condition.
Jessica emphasised how important it is to speak out about the condition to prevent people from being embarassed.
She concluded:
I’ve never actually met someone in person with HHT, except my sister, but I belong to groups online where I’ve met others like me.
It’s nice to be able to joke with others who understand about showers looking like crime scenes because of nosebleeds or the embarrassment of having to abandon our carts at the grocery store in order to pack our nose.
HHT isn’t all that rare in reality. If more people were educated and diagnosed correctly, we’d have more numbers and funding to go further with research and treatments.
Many also lose their lives from the disease because they just didn’t know. If getting my story out there changes that for just one person, I‘ve done my job and saved a life.
Keep up the good work, Jessica. You really are an inspiration!
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