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Osler-Weber-Rendu Disease: “The bleeding can be hard to live with, but I stay positive no matter what!”

Nov 14, 2019 • 1 comment

Pierre, 52, is a an administrative agent in a penitentiary, married and the father of 3 children. Diagnosed with Osler-Weber-Rendu disease, he agreed to talk to us about his symptoms, the treatment he receives and his patient care journey.

Osler-Weber-Rendu Disease: “The bleeding can be hard to live with, but I stay positive no matter what!”

Can you explain a little about what Osler-Weber-Rendu disease (aka “hereditary haemorrhagic telangiectasia” or “HHT”) is?

My blood vessel endings are swollen and slightly weakened causing frequent nose bleeds to the point of leaving me in a state of chronic anaemia with a haemoglobin level of between 09 and 10 grams per litre of blood, while the normal level for an adult man is around 13 to 17 grams per litre.

Sometimes the haemorrhaging is so bad that my haemoglobin levels fall below 6 grams per litre and I have to go get a blood transfusion.

Other parts of the body can sometimes be affected as well (lungs, brain, intestines, etc.).

What were the first symptoms of the disease and when did they appear?

Red spots on my face and hands (angioma), caused by the ends of blood veins that fill up with blood and expand. The first nose bleeds. The angioma showed up when I was around 16 and for the past 2 years, severe bleeding (I had to get transfusions to restore my haemoglobin levels).

How long did it take for you to get diagnosed? What tests did you undergo?

I didn’t take any tests before getting diagnosed. Usually, you would need to go see a geneticist, but two of my brothers had developed the disease before me, so I knew right away what it was. When my doctor broke the news to me, I was resigned to it. It’s a hereditary and very rare disease.

How are you now? Is this a curable disease?

For the moment, there’s no cure and the list of medications is long: Tranexamic acid 3gr/day to thicken the blood, a pomade containing vitamin E called Rhinovita that I apply every night to the inside of my nose, and Ferinject (ferric carboxymaltose) taken intravenously once a month. If we’re lucky that will put a stop to the haemorrhaging, but there’s no guarantee of that. My way of life hasn’t really changed.

Do you go to a reference centre to get treatment or to a physician?

I go to a day centre for my blood transfusions and Ferinject treatments. Once a year I also get an endoscopy/colonoscopy and an MRI scan of my lungs and brain.

What’s that hardest part of having this disease?

It’s a difficult disease, particularly with the nose bleeds which can start at work, at a restaurant, the pool, on the train, on the street…I stay positive in spite of it all, but I’m an optimist by nature. I always tell myself that other diseases like cancers or paralysis are much harder to deal with.

Do you have any advice for people newly diagnosed with this condition?

It’s a hard illness to deal with, but never forget that life is still beautiful!

Thank you Pierre, for sharing your story on your experiences with Osler-Weber-Rendu Disease. And what about you? Do you have or are you caring for someone living with Osler-Weber-Rendu disease? How were you diagnosed? And how do you deal with symptoms? Leave your answer in the comment section below.

Louise-B
avatar Louise Bollecker

Author: Louise Bollecker, Community Manager France and Content Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

on 12/6/19

Hi Pierre,

Thank you for sharing your testimonial; an interesting medical problem.

I've just had surgery for a brain aneurysm and am now on blood thinners which I am slowly trying to adjust too.

I didn't understand how the blood vessels were so connnected, until I had MRI/MRA testing and the Neuro-radiographer explaining the process of surgery and the aneurysm to me. It amazes me that one can have either too thick or too thin blood. After further testing on a check-up with the consultant and complaining of nose bleeds and bruising, he now tells me I have too thin blood. Dosages of Aspirin and Clopidogrel have been adjusted.

I had rhinoplasty (reconstructing and reshaping the nose) several years' ago and always put a nose bleed down to the effect of the operation. I understand how inconvenient nose bleeds can be especially in your case when it just doesn't stop bleeding heavily. 

Hopefully your medication is readily available and helps in this regard. 

Having both older brothers with the disease certainly helps one understand more about the condition, together with finding suitable medication and how to control it.

Genes tell us marvellous facts sometimes; my family all suffer from allergies and we all take anti-histamines regularly. I have had epilepsy for over 46 years which we found out was hereditary too; my Grandmother had it.  

Keep well and thank you again for sharing! 

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