Not Your Typical Nosebleed: A Case Report and Personal Account of a Patient With Osler-Weber-Rendu Syndrome

. 2022 Jun 15;26(2):138–143. doi: 10.7812/TPP/21.137

Patient Perspective
1. How does HHT affect your daily life? “I don’t know when my nose will start bleeding. These things can start at any time, and I have to be ready. That’s why I carry a nose clamp, many tissues, and an Afrin spray wherever I go.” “When I was first diagnosed, I was forced to retire. I had to build up confidence and learn how to effectively take care of my symptoms. That helps you make choices and live your life normally.” 2. What are your concerns for your future health? “I’m worried I will bleed to death, because it is unclear how long a bleed will last. For the future, I am worried about living by myself in case I go into hypovolemic shock. Now, I measure the bleeding by how long it lasts, and decide if I should go to the hospital if it takes too long to stop. COVID-19 makes the situation more complicated because simply getting a nasal swab will make me bleed even more.” 3. What are the psychological impacts of having HHT? “Until you learn how to stop a nosebleed and stomach pain confidently, you wonder, is this the one going to take me to the hospital? In social situations when I am dressed nicely, I want to avoid stained clothes out in public or with friends.” 4. Why did you choose to share your diagnosis of HHT? “I want everyone in the world to know about HHT; if I can save 1 person 1 night of stress, or show them what to do if they start to bleed, then it’s worth it. Other people with HHT do not want to tell others because they don’t know what it is; it’s nothing to be ashamed of, it’s how your body works.” 5. What do you wish health practitioners knew about diagnosing future patients with HHT? “If someone suspects HHT from heavy nose bleeding, they need to call an [ear, nose, and throat doctor] or hematologist for them to look in the nose, and see ‘ground meat’ for AVMs. The physician should notice that the bleeding is uncontrollable and the use of foam packs or even clamps should give some insight into the problem. Primary care physicians should also be more aware of patients that are having exceptionally long, heavy, and consistent nosebleeds and that there is more to a nosebleed than just a nosebleed. Listen more to what the patient experiences, especially if they have other comorbidities.”

Patient Perspective

1. How does HHT affect your daily life?
“I don’t know when my nose will start bleeding. These things can start at any time, and I have to be ready. That’s why I carry a nose clamp, many tissues, and an Afrin spray wherever I go.”
“When I was first diagnosed, I was forced to retire. I had to build up confidence and learn how to effectively take care of my symptoms. That helps you make choices and live your life normally.”
2. What are your concerns for your future health?
“I’m worried I will bleed to death, because it is unclear how long a bleed will last. For the future, I am worried about living by myself in case I go into hypovolemic shock. Now, I measure the bleeding by how long it lasts, and decide if I should go to the hospital if it takes too long to stop. COVID-19 makes the situation more complicated because simply getting a nasal swab will make me bleed even more.”
3. What are the psychological impacts of having HHT?
“Until you learn how to stop a nosebleed and stomach pain confidently, you wonder, is this the one going to take me to the hospital? In social situations when I am dressed nicely, I want to avoid stained clothes out in public or with friends.”
4. Why did you choose to share your diagnosis of HHT?
“I want everyone in the world to know about HHT; if I can save 1 person 1 night of stress, or show them what to do if they start to bleed, then it’s worth it. Other people with HHT do not want to tell others because they don’t know what it is; it’s nothing to be ashamed of, it’s how your body works.”
5. What do you wish health practitioners knew about diagnosing future patients with HHT?
“If someone suspects HHT from heavy nose bleeding, they need to call an [ear, nose, and throat doctor] or hematologist for them to look in the nose, and see ‘ground meat’ for AVMs. The physician should notice that the bleeding is uncontrollable and the use of foam packs or even clamps should give some insight into the problem. Primary care physicians should also be more aware of patients that are having exceptionally long, heavy, and consistent nosebleeds and that there is more to a nosebleed than just a nosebleed. Listen more to what the patient experiences, especially if they have other comorbidities.”