Nosebleeds are the most common sign of HHT

Nosebleeds HHT

Nosebleeds, medically known as epistaxis, are a common occurrence, typically caused by the rupture of small blood vessels inside the nose. While often harmless and easily treatable. Recurrent or severe nosebleeds may indicate an underlying condition, such as Hereditary Haemorrhagic Telangiectasia (HHT).

Hereditary Hemorrhagic Telangiectasia, or HHT, is a genetic disorder characterised by abnormal blood vessel formation. These abnormal vessels, called telangiectases, are fragile and prone to bleeding. This leading to recurrent nosebleeds as well as bleeding in other parts of the body. HHT can vary greatly in severity, with some individuals experiencing mild symptoms while others may face more significant health complications.

Early diagnosis and management are crucial for individuals with HHT to prevent complications and improve quality of life. If you frequently experience nosebleeds or have a family history of HHT, it’s essential to seek medical advice for proper evaluation and treatment. Understanding the symptoms and potential risks associated with HHT can help in managing the condition effectively.

VASCERN is the European Reference Network aiming at improving and homogenising care of patients with rare multi-systemic vascular diseases throughout Europe.

We strongly recommend you watch Vascern’s webinar on HHT & Nosebleeds HERE

 

We also strongly recommend that you share the information on the International HHT Guidelines with your GP and/or ENT consultant.

Vascern - nosebleeds HHT

Advice on Nosebleeds for the National Ambulance Service

John shares his insights on what advice he would like to tell the paramedics about HHT: NOSEBLEEDS

My name is John I am a HHT sufferer. I am 70 years old. I have suffered nosebleeds all my life, however I was not diagnosed with HHT until I was 63 years old. As a result of this condition I have had many interactions with the emergency services within my local hospital. 

To date I have managed to survive without having to engage the emergency ambulance services. However, should I ever be in this position my wish would be that I would be treated in the following way.

The paramedics would in the first instance deal with my nose bleeds by having the necessary products readily available, this may include nose packing materials, vessels to catch the stream of blood and tissues, wipes or towels. If the nosebleed can be brough under control in transit, I would then wish to be brought straight to the ENT department without engaging with the emergency department, which I feel is an unnecessary step in an HHT patients’ journey. However, I am aware that this may require an overhaul of the way the system currently works. 

I also think that paramedics should have sufficient knowledge to be able to establish that a HHT nosebleed is totally different to a patient with a run of the mill nosebleed. I have lost count of the amount of people who have told me all I had to do was to put my head back, or pinch my nose or put ice under my tongue and all would be well. I usually nod in agreement without telling them they haven’t got a clue what they are talking about. In my case, the paramedic needs to take their lead from me as this is a condition I have been dealing with for countless years and the traditional approaches to nosebleeds, unfortunately do not work for my type of bleeds.

In my case what normally happens is; I get numerous nosebleeds each week, most of these I can get stopped by either allowing my nose to bleed until the bleeding peters out or on other occasions packing my nose with a gauze type substance. However there have been quite a few occasions when all of the above failed to work and after a prolonged period of bleeding I would have no alternative but to head as quickly as possible to my local hospital’s emergency department, which is about a 20-minute drive away. This would usually take the form of me sitting in the passenger seat with a big plastic container in front of me to hold the blood and my wife doing the driving.

The points I would make in relation to my experience with the emergency services are as follows:

  •  I would question the need to have to go through the emergency department at all. I say this because I also have a vision problem called macular degeneration and that has caused me to also have to seek emergency treatment. However in this case I deal directly with the Ophthalmic department without ever having to go through the emergency department. In that way I am going straight to medics who are specialists in this area. Therefore when I have a serious nosebleed why can I not also go straight to the ENT department and be treated by people who are specialists in nose related issues?
  • My experience in the emergency department has been very mixed, most times when I arrive with a container full of blood and blood streaming out of my nose I am seen immediately. The doctors I meet in the emergency service are usually junior doctors and some have a little or no knowledge of HHT and therefore I usually have to spend some time telling them what I know of the complaint. All they can ever do is plug my nose and then admit me as an inpatient to the ENT department.
  • As previously stated, the doctors I have encountered in the emergency department have been a mixed bag. Some seemed competent at dealing with severe nosebleeds, whilst others seemed a bit overwhelmed by it. On one occasion I recall a doctor placing a balloon type product up my nose and then proceeded to fill it with air, however he put so much air into it that my whole face nearly exploded. I was then admitted late at night as an inpatient and spent the whole night roaring with pain and the nurses having to give me strong pain killers. When I was seen by an ENT doctor the next morning, they could clearly see that the balloon had been expanded much too much and when they let some of the air out of it I only then did I get great relief. This again is a reason I believe for cutting out the “middleman” and allowing patients go straight to the department that is best equipped to deal with their condition in this case the ENT department.
  • Another example is where once again I arrived at the emergency department with a serious nosebleed and once again my nose was packed, and I was admitted to the ENT department. On this occasion due to a variety of reasons such as operating theatre not being available and because they were researching a new treatment that they decided they were going to try (injecting Avastin} I was left for many days with the packing in situ. When they eventually removed the packing from my nose, I experienced a mild form of sepsis. I had a fever and was shivering in the bed.  This caused a bit of a panic and I had to be given medication to deal with this new ailment. Again I feel if I had been able to deal directly with the ENT service I would have had the packing in for less time and as a result I would have had to spend less time taking up a much needed bed in the hospital.

In conclusion I have to say I have great admiration for the people who work in our emergency services. I know they do trojan work. It is just that in my HHT journey I feel that having to engage with this service is an unnecessary roadblock. I much prefer the ophthalmic version where in my case when an emergency situation arises, I go directly to them and am seen hastily by people who are specialists in this area.