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‘You got blood on your face, you big disgrace’

Currently, one of the most prized possessions our kids have is the Queen Greatest Hits CD. When Eleanor was a baby, we played Bohemian Rhapsody by Queen or the Muppet’s version for her every time she needed an echo or to have a test done at the hospital. The love of Queen passed to Theo and the CD is queued up in the car ready to go. Right now, We Will Rock You is their favorite, and it seems so oddly fitting they have been singing it for weeks and now it really is ‘blood on your face’. (Minus the disgrace part, of course.)


We are used to the frequent nosebleeds HHT causes, but it also causes telangiectasias, or small blood vessel malformations, to occur on the skin. Just like ones in the nose, these can bleed too. Eleanor developed a telangiectasia on the right side of her face and for a few days there were no issues. She was at school when it ruptured and it has been bleeding off and on for over a week now.


There aren’t a lot of options for dealing with bleeding telangiectasias on the skin. You can try to prevent them from bleeding or you can try to remove the malformed blood vessels. Keeping the area moisturized and trying not to bump the skin will lessen the likelihood of bleeding. We were covering Eleanor’s telangiectasia with a Band-Aid; but while they are exciting to wear for a 4-year-old, they are not very exciting to change. We currently live in South Korea and these small, hydrating stickers are very popular for skin breakouts. I picked up a few packs and we have been using them to moisturize and cover the spot. So far, they are working really well! They are not as exciting as dinosaur bandages, but tolerable for us to remove and change each day. Plus, they are more discreet and draw less attention and concern.


Eleanor saw her primary care manager on our military installation and he gave us a referral to see the dermatologist. To remove the malformed vessels and stop bleeding, he gave us a couple of different options. First, we could try hyfrecation which is a form of electrosurgery to cauterize the area. We could do this in the clinic while Eleanor is awake, but it may be a traumatic experience for her, as she would have to be held down very tightly. The other option is to destroy the vessels with a pulsed dye laser which targets blood vessels in the skin. This technology is not available on the base, so we would have to go to a local Korean hospital for the procedure. Because the telangiectasia is close to her eye, an eye shield is necessary for laser treatment, and children typically do not tolerate it well. It is therefore preferable for Korean hospitals to sedate kids prior to the procedure.


El is due for another MRI and echo when we get back to the US later this summer, so we are going to try to hold off until then. She has to be sedated for the MRI, so we will try to coordinate with multiple departments at the hospital and get her telangiectasia lasered then.


In other Friday family news, we had our third child in March of this year! Graham was born right in the middle of the coronavirus pandemic here in Korea, but he didn’t seem to mind. We are not sure if he has HHT – we will get genetic testing done as soon as we get back to the U.S. We tried to facilitate testing while here in Korea, but unfortunately it was not feasible. So far, baby boy is healthy and very happy! We hope all of our HHT family is the same.

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