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: