My name is Lesley-Ann Green. I am 57 years old and a proud Capetonian who has travelled and lived overseas. I work as an acupuncturist and teach Internal Martial Arts. And I have HHT (Hereditary Haemorrhagic Telangiectasia, or Osler-Weber-Rendu disease). Over the years, HHT has become a much larger part of my life than I ever anticipated.

I was diagnosed with HHT in my mid-30s. At the time, information about the condition was sparse and not readily available to me. My father had been diagnosed a few years earlier after I rushed him to the emergency room several times with severe nosebleeds. Later, my daughter was diagnosed in her 20s, while my grandson thankfully does not have the condition. Because my father was adopted, I couldn’t trace our family history any further back than that.

My experience has been unusual. Initially I bled profusely—from my nose, throat, and even my ears! At first, I thought it was stress-related, and while stress does exacerbate my symptoms, I now know it’s not the root cause of the problem. I helped my dad manage his stress associated with bleeding by teaching him to stay calm and breathe deeply. My daughter has found relief through yoga. For me, giving up a high-stress job and returning to studying was life-changing. My daily Tai Chi Chuan and meditation practices have been invaluable in managing the bad days.

Over the last five years, my HHT has become worse. This past year has been, as a friend jokingly put it, “bloody awful.” My work and quality of life have suffered, and I’ve felt constantly exhausted. In January, my haemoglobin and ferritin levels were very low, prompting a referral by my private haematologist to the Groote Schuur Haematology dedicated HHT Clinic. This has been life-changing.

As someone who enjoys surfing, motorbiking (on my Classic Royal Enfield 500cc), training martial arts and studying, slowing down has been a challenge. I haven’t surfed in over a year, but I still ride my bike—just not on “low-energy” days. I’ve also learned to pace myself and avoid 12-hour workdays.

I have had more than several iron infusions, which have been a huge help, along with daily tranexamic acid to assist with clotting. I take iron supplements, wear black to hide blood stains, carry toilet paper (when I remember), eat iron-rich foods, and prioritize sleep.

I have had some horrendous bleeds in public. Horror-movie kind of nasty. Once, riding my bike back from Wilderness, I couldn’t stop during a severe nosebleed due to traffic. By the time I reached a garage with a bathroom and removed my helmet, people were offering to call an ambulance for me. Another time, while surfing and waiting for a wave on the backline, I started bleeding. Fellow surfers shouted at me to get myself out of the water. “Get out, wait for it to stop! Paddle out again later!”. Nobody wants to hang out on the backline with me. And nobody jokes about sharks.

And…the telangiectasia – those small red spots on fingers, toes, face, tongue and lips? They bleed too. I had a dermatologist fascinated with me when I pointed an index finger at him as it bled like a fountain. When my lip bleeds, I crack vampire jokes.

I go for regular acupuncture treatment with a colleague and manage my stress as best as I can. My hope for the future for HHT sufferers is that genetic and epigenetic studies will find keys to deeper understanding and ways forward, including – dare I say it? A cure.

How do I explain HHT? It’s a genetic bleeding disorder. What does it mean to me? It keeps me real. It forces me to watch myself closely and has taught me patience, compassion, and the value of living fully in every moment. Despite setbacks, I’ve completed another set of studies and still find time to paint and exhibit my work.

What I wish more people understood is that HHT isn’t just about nosebleeds, though they’re a big part of it. Groote Schuur’s phenomenal ENT clinic has been a source of great support, advice and treatment.

After a routine screening MRI brain and CT chest scan to look for internal arteriovenous malformations (AVMs), it was revealed that I had an AVM within my right lung. Surgery on my right lung was successful, and early next year, I’ll see a gastroenterologist to check for bleeding telangiectasia in my gut.

I’m deeply grateful for the doctors and staff at the Groote Schuur Haematology clinic. They are always happy to see me. And they care. I have had access to the best possible treatment and exposure to the latest research in HHT within South Africa.

I have also learned more about living with HHT through a group of us on Whatsapp, made possible by BLOODSA. This really helps to create a supportive community of people living with HHT, and knowing that I am not alone and that others have the same challenges as I have is incredibly beneficial to me. Sharing humour and stories with others who have the same challenges as I do has been a gift. We come from different cultural backgrounds and belief systems, but I have found that there is a commonality of deep spiritual faith. I have further support from a small, supportive and caring community within the farm on which I live.

Despite having HHT, I live a very rich and fulfilling life.

Listen to BLOODSA’s interview with Pippa Hudson on 567 Cape Talk here: