Face #11: Lucy

Meet Lucy, who lives with Marfan Syndrome, one of the many connective tissue disorders causing hypermobility.


Lucy started experiencing symptoms of Marfan Syndrome when she was 10 years of age, but wasn’t diagnosed until the age of 15. You can read more about her experiences of being diagnosed during adolescence HERE.


Lucy has had major spinal surgery to correct a scoliosis, lives with chronic pain and joint instability and is therefore not able to work. She hasn’t had a chance to pursue a career, being only in her early twenties. Lucy spends her time blogging, caring for her pets and engaging in arts and crafts – ones which her body allows.


Lucy has a team of health professionals who work with her, like most people living a connective tissue disorder. The doctor she trusts the most is her cardiologist who plays an integral role in the management of her heart related complications relating to Marfan Syndrome. On a daily basis, Lucy manages a whole range of symptoms caused by Marfan Syndrome and it’s related co-existing conditions such as Postural Orthostatic Tachycardia Syndrome, anxiety and most problematic of all, widespread pain and fatigue.


Having dealt with a lot of health professionals in a short period of time, Lucy recalls the horror of one physiotherapist once telling her she needed to “park up my health troubles and leave them there”. Lucy recalls “her manner was very rude and that her behaviour indicated she knew very little, if anything about Marfan Syndrome.”


Health professional ignorance is a big hurdle that people living with connective tissue disorders have to face, which really shouldn’t be the case. After all, if a health professional can’t understand the condition, how can we expect others to?


On that note, I asked Lucy what is one thing she wanted the world to know about hypermobility and she replied “That it does not just mean bendiness or flexibility. It can come with a whole host of problematic symptoms.”


Marfan Syndrome is fairly well documented in academic literature, however many health practitioners are still ignorant of the condition and the ways it affects the individual who has to live with it on a daily basis. If you’re a health professional reading this, do the next patient who walks through your doors with Marfan Syndrome a favour & educate yourself, even just a little. Knowledge is power.