YOUR STORY OF HHT
Each story is unique, and what makes it valuable is YOU.
Have you ever thought of sharing your life’s story as an HHT patient?
Do you measure how valuable your life story and your experiences are for the world?
When we suffer from a disorder we often feel lonely and isolated. However, many of us suffer from HHT and it is by working together that we can find effective solutions to improve HHT patients’ daily lives.
As we know, sharing our experience is essential to living better with a chronic disorder. The more we talk about it, the more we can change things. Here are some reasons why you should share your story:
Step back, put things into perspective
Talking about your disorder enables you to take the time to acknowledge everything that happened to you and your loved ones, how it made you feel, what you did, and the way the experience(s) influenced your present life.
Sharing an experience leads to more objectivity and it is also an opportunity to explore things in a way we haven’t thought of so far.
Breaking the silence related to a rare disorder is crucial to feeling liberated and overcoming the feeling of loneliness or helplessness.
Inspire others, show that it is possible, because yes, you did it!
Not only do you help and heal yourself through a therapeutical approach, but you will inspire and support others by sharing your unique experience. And what makes it unique is precisely YOU.
Do you remember the last time you felt really alone with a struggle in your life? What if someone told you at that time that things were possible, that you could make it because they did?
Now you have the chance to be this person for someone else by sharing your story.
HHT is a rare disorder, which means that we need to raise awareness to make this disorder known by more people.
By participating in writing our story of HHT we create more information and show the world that we matter.
Together we have the power to change things.
You can send us your story to firstname.lastname@example.org
We can’t wait to read it!
Here are some incredible stories that we hope will fill you with positive energies and courage!
Read our patients’ inspiring stories
Every story is unique…
Aodhan’s Story: On Aodhán’s 56th birthday in 2006, he suffered a stroke. 5 years later in 2011, he was found to have a Pulmonary (lung) AVM, as a manifestation of his HHT. This was successfully embolised at the National HHT Centre, in The Mercy University Hospital in Cork, under the care of Drs. Adrian Brady & Terry O’Connor. Aodhán’s recovery has been such that he cycled 5500 km (3800 miles) across America, from Los Angeles to Washington DC, in 2012, and he has subsequently guided others on cycling trips in Ireland, Poland, Vietnam, Laos and Cuba. Aodhán remains very fit and well, other than suffering from heavy nosebleeds, especially in response to temperature changes. HHT remains part of his life, but successful treatment of his pulmonary AVM has maintained his healthy, active lifestyle and protected him from further strokes
Christian’s Story: Christian was just 3 years old when he suffered a sudden brain haemorrhage due to HHT. Although Christian was not formally diagnosed, his mother was aware of HHT in the family and informed the ambulance crew and the doctors immediately. Due to the quick reaction time and knowledge of HHT by both Christian’s family and the team of doctors & surgeons, his life was saved. Today he continues to recover and is doing well
Mary’s Story: “I was finally diagnosed with HHT in 2016 after 30 years of suffering with severe nosebleeds and its side effects. My nosebleeds started around 1988. I had my nose cauterized for the first time in 1990 and since then many times. In 2015 it was cauterized five times in one year. Nobody seemed to know what was wrong and it was very scary. Every time I went out socially I would go laden with tissues and a change of clothes and I could never wear white. There were times when it was so bad that A&E was the only option.
In 2015 I had an accident and during my recovery I asked my surgeon did he know anybody who could help me. Finally in 2016 I was put in touch with an ENT specialist who diagnosed HHT. My relief was immense to get a proper diagnosis. I was referred to Mercy Hospital in Cork where genetic tests and others were carried out. I was very low in iron and my haemoglobin was on the floor. My three children were tested and two of them have the condition and one of my grandchildren also has the gene. My daughter has an AVM on her liver and my son has one on his lung. Both will be monitored for the rest of their lives.
The good news is I have had my nose lasered twice and I take iron supplements which has brought my iron and haemoglobin levels up to almost normal levels. Also the nosebleeds have greatly reduced ,so all in all a very positive outcome for me.
I am not out of the woods but the improvement is great and knowing about my condition is a positive thing in every respect.
I am involved with HHT Ireland – a patient support group and having that support is of great benefit to me.”
Richael’s Story Part1/3- Youtube:
” HHT? Never heard of this condition at all in my life until I ended up pregnant on my little girl Layla in 2011.
Pregnancy at the start was all normal. I had morning sickness that lasted 3 months but over-all my pregnancy was great until I woke up one summer morning in July 2011 to brush my teeth. I started to brush and all of a sudden lots and lots of blood started coming out of my mouth. Not just spilling, but actually spurting out onto the mirror in my bathroom and all over. As I ran to get towels to stop it, it just wouldn’t stop. I had to call my Aunty that morning to come up, while trying to explain while holding tea-towel in my mouth. She came inside house and her reaction was ‘ Has someone been murdered?’ as the blood was so bad!
She brought me to Wexford General Hospital where I was seen straight away. The doctors were very surprised and concerned with so much blood I filled in the car and the way I looked. At one stage I think I must have had about 5 doctors’ hands in my mouth while others were running around screaming at each other, while another doctor was on the phone trying to get some special mouthwash to help stop bleeding. I remember him saying ‘I have a girl 7 months pregnant bleeding out and we have no way stop it’.
There was so much going on around me I didn’t have time think. I just remember feeling very fatigued and had no energy to do or say anything. My Mam soon arrived and she got such a fright when she saw me. They told her when she arrived it is basically life or death as they had no idea how to stop the bleeding. After few hours in A&E they eventually got control of it and I was moved to the Labour ward while they were still ringing around various hospitals to try get an explanation of what was going on inside my body.
As I lost so much blood I was given a blood transfusion but because of this I started to go into labour so I was rushed to Waterford Regional Hospital and between the two hospitals I had 8-10 units of blood all together. Luckily enough Layla did not arrive and I had to stay in Waterford Regional Hospital until things were under control and they had to put plan into place for a possible labour. I also then formed a lump at the back of my ear that they were concerned about. I was scheduled in for C-section on 17th August. My due date was 23rd but because of this they recommended it was safer to bring me in and do C-section by local anaesthetic in case I started to bleed out.
Layla was born a healthy and happy weight of 8lbs1oz! After she was born I was undergoing a lot of scans and blood testing to see why I had such a bleed. I was still bleeding from my gums where I had the haemorrhage. I was then sent to St. James Hospital – to the Coagulation Centre where they discussed I might have a blood-vessel condition – HHT. I was very much all over the place emotional & mentally as I had to go back and forward for appointments in Dublin. Eventually they came to conclusion that I had HHT.
HHT is a genetic blood-vessel disorder which can affect many major organs. If HHT is suspected we should make appointment to visit our National HHT Centre in the Mercy University Hospital Cork by emailing the co-ordinator – email@example.com
So from this lump at the back of my ear they found a malformation. It doesn’t bleed but because of pressure (it had a massive pulse) it was like a heart in my ear! This pressure had me feeling sick and dizzy. Even walking or being in anyway active I would have to lie down until it would calm down.
I was then sent to a consultant in Hammersmith Hospital in London called Dr Jackson who performed 3 angiograms on me. He put glue in that area to stop the pulse which worked! I was able to do more active things without being in pain. The last angiogram he did was to put glue in my gums where telangiectases are that caused the bleed in first place.
It’s 2021 now, Layla is 10yrs old and I’m still attending St James’ Hospital in Dublin. In the last few months my pressure has come back in that area due to wisdom tooth being impacted, so therefore I’m undergoing more scans and angiograms before they decide to remove tooth as complications could arise. I recently had to leave my job as a beauty therapist due to pressure again in that area. It’s not as bad as it was in 2012 and other years, but I feel now it’s at me again and has stopped me doing my hobbies such as dancing. It has also stopped me from working. I am waiting for more MRI scans as these scans need to be done every 5 years to see if any more AVMs have formed around my body. Layla has also been having nosebleeds which is another sign for HHT , so she has been referred to Crumlin Hospital and is awaiting tests there.
There needs to be more awareness of this condition HHT as it can have a huge impact on your life, no matter how big or small, whether it’s nosebleeds or AVMs around the body . I think personally MRI scans and CT scans should be given to all age groups to detect any AVMs or other signs of HHT. I’m lucky to have Layla and I guess if I hadn’t been pregnant with her I wouldn’t have known I had HHT. I am forever grateful to all the staff in Wexford General and Waterford Regional Hospitals. I can’t thank St. James’ Hospital, Dublin enough for helping me detect HHT and for getting me the treatment I needed by the great consultant Dr Jackson in Hammersmith Hospital, London.
It’s such a pity that I had to travel to London to get the necessary treatment. Why was I not referred for treatment here in Ireland? We need to know where our HHT specialists are and we need our GPs to be able to refer us to them in a quick and timely manner.
I have been advised that if we contact our National HHT Centre in Cork – they will perform the necessary screening for HHT along-with the genetic blood testing. They will also be able to refer us to the relevant specialist here in Ireland for further treatment – depending on which organ(s) is affected.
I hope by sharing my HHT story, it will help others who are suffering also to get a prompt diagnosis & proper treatment.”
Although I was born with Hereditary Haemorrhagic Telangiectasia (HHT) it wasn’t until I was 43yrs that I got a diagnosis. I was hospitalised for several days after a major haemorrhage from my nose. I had all 4 of the criteria of this disease. I spent my life growing up thinking this was just part of my life, my dad’s life, and my brother’s life. I knew my Grandad, my dad’s father, had died at the age of 52yrs – long before I was born – with bleeding on his lungs but that was as much as I knew.
I had just lost my dad to Lymphoma 6 months prior to this and also lost my only brother 5yrs prior, so it was down to myself and husband to do some research.
I attended ENT regularly for the nose bleeds for the next 3yrs after this incident, constant bleeding followed by constant cautery. But these bleeds weren’t normal nosebleeds. They were fierce, they were unexplained, the kind that were unstoppable, the kind that could take your life.
I had been trying to get holiday insurance with no luck at the time and had mentioned my diagnosis from ENT Dept for HHT and my research was flagging up a rare, genetic blood vessel disease that required urgent scans and monitoring. However a visit to my then GP left me with a litany of questions – “did you pick your nose?”…..” you couldn’t possibly have this disease” ….”it’s too rare”….”Who told you this?“…”I’ve no clue where to refer you to” etc. And so I started to realise how difficult it was to live with the debilitating symptoms of a rare disease. I was starting to realise I had to make my voice heard over the sea of professionals.
In August 2014, I collapsed while out walking my dogs with a Pulmonary Embolism (P.E.) and Deep Vein Thrombosis (DVT). I was thankfully found lying in a neighbour’s garden by a passer-by, and although this could have been potentially fatal, it turned out to lead me in the direction of The Haemophilia Centre at Bridgewater Suite, Belfast City Hospital. It was here that I tested positive genetically for HHT and continue to be tested due to a link to Lymphoma from my late dad and his brother who has HHT.
Hereditary Haemorrhagic Telangiectasia is a rare genetic blood disorder that affects the blood vessels with 50% risk of passing it onto your child. It doesn’t skip a generation, you either have the gene or you don’t. HHT patients have blood vessels that have not formed and cause spontaneous bleeding both internally and externally. Arteriovenous Malformations (AVMs) are a tangle of abnormal blood vessels that can form in our brains, lungs, liver, gastric tract, and bowel. The frequent loss of blood leads to iron deficiency anaemia and more serious haemorrhaging and possible loss of life. Sometimes it’s as simple as bending forward, a change in temperature or stress that can bring on a bleed. It’s a progressive disease and there is NO CURE. My biggest fear is that the next bleed won’t stop and being alone when it happens. In the meantime, I’m on a 24hr helpline at my local Haematology Unit. I have a marker at my address for a priority 1 ambulance or the help of a paramedic. For the last 6yrs my GP at Rosehall is always at hand for emergency help and urgent blood tests.
Although each HHT patient has the disease, we are each affected differently. I have severe nose bleeds, mouth bleeds, gastric and bowel bleeding, I have bleeds from my eyes, mouth and arterial bleeding from my finger. Every day I experience frequent degrees of blood loss from somewhere. I have had a total hysterectomy and am on blood thinning drugs permanently as I also clot. There is a fine line between bleeding to death and clotting to death.
An example of how much awareness can help – we now know that cautery can cause more trauma, which in turn makes us bleed more. It’s a simple technique to stop a minor bleed but if you’ve HHT it can cause a lifetime of trouble.
The disease should be managed with frequent iron infusions and blood transfusions as required.
A big shout out to all those people who take the time to donate blood. This is life saving for us.