The story of Kristina
My name is Kristina Violante and I have HHT, up until 10 years ago I was unaware that this disease even existed. A couple of years ago my father passed away my sisters and brother and I noticed my mum was becoming abit vague. We took her to visit drs thinking that she may be showing signs of Alzheimers she was in her early 60s at the time. A number of tests later and she was diagnosed with lesions in her brain as a result of HHT. That was the beginning of our life with HHT. My brothers, sisters and I were assessed although nothing was conclusive. Although I was used to having blood noses and had numerous red spots on my skin it wasnt until my children were assessed and my son Matthew showed lesions in his lungs that my blood was sent to America to determine which chromosome had the mutation. Once this was confirmed it was a simple blood test to find out if any family members had the disease. It turns out my youngest daughter also has the disease although her symptoms are only frequent nose bleeds like me. As my mums condition progressed she suffered mini strokes that left her with no movement in one arm and a lack of comprehensive speech, she passed away at home at 67 from a bleed to the brain.
Meanwhile my son was being treated by Royal Adelaide Hospital, throughout his childhood we were under assumption that he had asthma as he was short of breath and would cough on and off all night. At 18 having being diagnosed with HHT he had several coils placed in both lungs to seal off the lesions which were denying him sufficient oxygen. After this procedure (embolisation) his oxygen levels increased.
Over the next 8 years he had a number of these procedures done, however by about 2009 ( age 24) he begun coughing up blood, sometimes minimal other times cups worth at a time. Around this time he also started getting numbness down one side of his body and would collapse. He was taken to hospital many times but short of having other coils put in his lungs not much else was done to prevent any recurrences. Unfortunately Matthew had a major bleed in his lungs collapsed at home and was unablke to be resusitated by the paramedics.
Matthew passed away on 10th of A ugust 2011 at age 26.
In 1946 my grandmother passed away from a lung condition at the age of 29. My mother always remembered her mother being quite sick and in bed often. It is now our assumption that she had HHT but was never diagnosed due to lack of information.
Since Matys passing my family, friends and I have formed a group called ” MATTYS SOLDIERS”. In September 2011, just a month after Matthews passing over 100 “MATTYS SOLDIERS” walked or ran the city to bay fun run in his honour with the intention of raising awareness and money for HHT. On 3rd March Matthews 27th birthday “MATTYS SOLDIERS” held a fundraising dinner at the Marche club to get HHT message out to our community. It is our aim to raise money and finance a post graduate student to research cures or preventions of HHT at the Royal Melbourne Hospital.