HHT One-liners

Annyeonghaseyo! Hello, from South Korea!

I haven’t written a blog post in a few months because our lives have been uprooted by the Army once again. My husband graduated Captain’s Career Course in May and our whole family moved from Virginia to South Korea in June! We spent time getting both our children screened for vessel malformations, making sure they were healthy enough to be sponsored by the government overseas, and getting copies of all their medical records.

Since arriving here, we have been enjoying learning about our new culture, eating new foods, and making a lot of new friends. Of course, a new move means new doctors for everyone and new explanations of HHT. As a reminder, my husband and our two children (2-year-old daughter and 8-month-old son) have HHT.

As we move around and constantly meet new people, I struggle with finding ways to explain HHT. I have several different approaches depending on the situation, but sometimes my emotions get the better of me. For example, I was at the gym the other day and our daughter got a nosebleed while playing in the children’s area. As I put down my weights and began to get wipes to clean her up, another woman in the gym told me that her son gets nosebleeds from time to time when the air is dry. We have this innocent exchange with someone almost every time we are out in public and a nosebleed happens. What do you say?

Currently, I am feeling the stress and tension of moving across the world, trying to adjust, and find a new routine. Part of me wanted to hastily explain that she has a nosebleed because she has a genetic disease and leave it at that. I have never thought that was a tactful response, because nosebleeds are very common with children! How would this poor woman ever know – she was just trying to offer solidarity while I tried to clean my squirming toddler’s nose; a sentiment I truly appreciate.

I reached out to one of the HHT community groups on Facebook to see what others say when these circumstances arrive. Many of you are also in the same boat – trying to constantly explain HHT in a way that encompasses the magnitude and weight of the disease without sounding like you are trying to story top someone who also has a child with occasional nosebleeds. Here are some great one-line responses:

Unfortunately, it is more than a nosebleed. She has a genetic disease called HHT that can cause bleeding other places, too.

I have had recurring/frequent nosebleeds all my life. It wasn’t until recently I discovered that I have the disorder HHT, which helped me understand why.

It is a vascular disorder that can be like a weak hose. Sometimes it balloons, sometimes it springs a leak. Since veins are all over, these issues can be found anywhere in my body.

I wish it were simple, but unfortunately, we have a genetic disorder called HHT which results in serious bleeding in some of our major organs, as well as the nose. It is an incurable condition.

I think all these one-liners are useful to quickly explain HHT and represent its importance in a succinct way. Another member of the HHT community pointed out that HHT is largely an undiagnosed disease. There should be no shame in asking a couple of questions yourself.

‘Does your son get nosebleeds often? Do you or his father get them, as well? I ask because she has a genetic disease where nosebleeds are a common symptom. Most people with HHT are actually undiagnosed.’

This is my typical response. My inner advocate (must spread HHT awareness!) jumps out and I often offer too much information. It annoys my husband at times, but I find that most people are genuinely interested. There have even been times when people ask for more information because they suspect a friend may have the disease.

Another member of the HHT community offered this advice:

They are not trying to minimize your problem, they are trying to empathize.

I thought this was just golden. I believe most people are inherently good. I know it can be annoying to explain this complex disease over and over or to get advice on how to stop your nosebleed every time it happens (my husband’s biggest pet peeve), but people are just trying to be helpful. You can be helpful, too! Tell them about HHT. Ask them a question about their nosebleeds. You may find some of the undiagnosed and pull them into our HHT family!

What are some other great one-liners you use when explaining HHT?

6 Comments

  1. Amine on August 22, 2018 at 10:48 pm

    Recently diagnosed at age 73. My nephew has it also. Now i understand why i had to wait in the Target clinic for so long for the bleed to stop and i worked at Target. It has been a shock to think a heart attack they could not confirm was possibly “just”small blood vessels. This was four years ago and if the doctor had looked at the spots on my hands and body i may have known earlier. Have my entire family on alert now. Best to you all

  2. Tina Weber on August 23, 2018 at 6:09 pm

    My daughter has a huge AVM on her pulmonary artery and is having it fixed on the 28 of this month. Two of her boys have had scans and now one needs a MRI the other needs a angiogram. I have coils in my lungs and our other daughter had encapsulated place on her brain which turned out to be strep A which traveled from a AVM that wasn’t fixed.

  3. Diane Alexander on August 26, 2018 at 8:04 pm

    Thanks they are all great ways to answer nosebleed -Questions.. It can be frustrating…😢

  4. Jeni nunnally on August 28, 2018 at 7:44 am

    My Dad had HHT. Lived to 91. It was miracle because he had massive nosebleeds. Never knew what he had until someone suggested maybe I had HHT when I had a nosebleed in front of them. Sure enough. Only one sibling. She also has it. Two of my three kids have it. My daughter was tested. My son refuses to be tested and non of his kids have been tested. He feels since his Grandpa lived to 91, why should he worry? Doesn’t think his kids are affected because they don’t have nosebleeds. (18, 16 and 12). “Besides”, he says, “if HHT is incurable, there is nothing they can do”. How do I respond to this?

    • Cassi on August 29, 2018 at 8:59 pm

      Jeni,

      That is a tough one! My husband’s family has people who are the same. If you read my previous posts about genetics of HHT, it may help to explain to your son how it is important to be tested even if you don’t have nosebleeds. I would just tell him that not everyone with HHT has nosebleeds, but they can still have AVMs in their brains and lungs.

    • Cassi Friday on August 29, 2018 at 9:07 pm

      Jeni,

      I would also add that his children need to know if they have HHT because they may want that information when it comes to their future family planning. If he gets tested and is negative, no one has anything to worry about!

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