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My name is Rebecca Mason and I have Marfan Syndrome
For you, the 9th of October 2018 may have been a run-of-the-mill forgettable day – get up, coffee, work, light exercise, dinner, family time. The usual. But for me, it was the day, at age 31, that I underwent open-heart surgery.
Flashback to 1989 and I had just turned 2 years old. I kept running into glass doors and Mum questioned my eyesight, or lack thereof. She waltzed into the ophthalmologist’s office, aiming for a glasses prescription before we’d head to David Jones for lunch. Instead, she was being handed documents and scripts to take me to the Children’s Hospital. Dr Martin had calmly highlighted he suspected I had Marfan Syndrome – a connective tissue mutation where the most fatal aspect of Marfans involves the heart.
The tests came back confirming I had Marfan Syndrome. We never made it to David Jones that day.
With Marfans, the aorta is about twice the size of an average person’s. The biggest risk is that if it doesn’t stop growing, it ‘dissects’ (splits in half) with a high chance of fatality. To reduce the chances of that happening, open-heart surgery is required to spare the valve.
Every year since I was 2, I had been monitored annually. Hooked up to echocardiograms and the growth of the aorta measured until I’d reach that at risk ‘red zone’. I’d somehow made it to 30 without needing the jaws of life, but stats showed it was just around the bend.
I hope you are all keeping well during these unprecedented times.
It is tremendously heart-warming for me to hear Rebecca’s story and how well she has done post-surgery. She truly is an inspiration! Rebecca was diagnosed with Marfan Sydnrome at a very young age and is one of the many patients that we at The Baird Institute have been able to help. Rebecca was referred to me by her cardiologist in 2018 and an operation followed soon after.
On the back of the well-established Aortic Diseases Clinic at Royal Prince Alfred Hospital (RPAH), co-founded by Professor Richmond Jeremy and I, we have established multiple arms of research looking at the varying stages of aortic disease. These include basic scientific research in the laboratory to determine the factors (both inherited and social) that lead to the development of aortic aneurysm disease in addition to interventions to stop that process. Some other areas of research are of course related to the best ways to treat already developed Aortic Aneurysm Disease surgically, with the best quality of life and survival outcomes. Suffice to say, the areas of research are a wide-ranging umbrella that cover all aspects, and this is typical of the multi-disciplinary approach that we take clinically as well as scientifically at The Baird Institute.
When this Aortic Diseases Clinic began it was known as the Marfans clinic because Marfan Syndrome is the best known of the inherited aortic diseases. It is the treatment of these Marfan patients that we use as a benchmark when we measure ourselves and our success rates in treating this disease.
Treating someone with Marfan Syndrome is often about treating a family and treating them for life and as such, gives us a real chance to get to know them which is always a great joy and a great privilege.
As health care professionals, we are trying every day to make lives better for those many Australians diagnosed with some form of disease affecting the heart, lung, chest wall and diaphragm that is treatable with surgery. These people are now more vulnerable than ever due to the Coronavirus.
As always, we thank you most sincerely for your past support. Without it, our work would not continue. Because of the Coronavirus, our organisation, like many other charities, has been negatively impacted with a large reduction in our income stream. Your continued support will provide the next phase of resilience for The Baird Institute, one that will provide a lifeline for so many.
If you can support this Mid-Year Appeal 2020, please know that your trust and assistance is valued by every member of our team.
Your generous gift of $50, $200 or $500 will go directly towards maintaining our research and training initiatives – initiatives which have a direct impact on people like Rebecca and the on health of more than 1/3 of Australia’s population, so please support us today.
With since thanks,
Professor Paul Bannon PhD MB BS, FRACS
Chair, The Baird Institute