Bianca's Story

Bianca’s symptoms started aged 28, in 2013, when she was training as a Dietitian. She was on a placement at King’s College Hospital when she became so swollen that she was unable to bend her arms and her entire scalp was blistering and bleeding, she was taken to the A&E Department. Bianca had been unable to lie down properly for 3 weeks prior to the placement as her skin was so painful and swollen.  

Bianca told us, “During this time, I was taking codeine daily for my Ehlers-Danlos Syndrome, due to repeated sprained ankles (the joys of faulty collagen). I believe this pushed me quickly into my first flare up.” 
 
Bianca lives with Ehlers-Danlos Syndrome Hypermobility (HEDS), Endometriosis, Raynaud’s Syndrome, Postural Hypotension (POTS), Dysautonomia and previously Gastroparesis.  

“I remain grateful that at the time my MCAS symptoms erupted, and I had access to the Dermatology and Immunology Department at Guys and St Thomas Hospital. I was referred by my POTS specialist quite quickly. For me, having a diagnosis has been so important, as the medication has improved my symptoms. Also, through my own research and with my background as a Dietitian, my reactions have improved. “  

I do have some dietary restrictions, but fortunately I can manage this because of my profession as a Dietitian.

I am employed by the NHS as a Renal Dietitian. Initially I applied to be a doctor but turned this down as I was concerned about how night shifts and long hours would affect my health, so I undertook a BSC in Dietetics and Nutrition. My role involves working with patients with chronic kidney disease, including patients on dialysis and undergoing kidney transplants.  Prior to this I was a Gastroenterology Dietitian where I worked with a few patients with Mast Cell Activation Syndrome (MCAS).  

During the Covid-19 pandemic, I was classed as extremely clinically vulnerable because of my health conditions. My role had to change from being 70% ward based and running two outpatient clinics per week, to only conducting outpatients’ appointments via telephone, for 2 years.  

I am always trying to remind myself that despite all of my daily symptoms, I’m still employed, albeit working less hours, and doing the best I can - despite the difficult circumstances I find myself in. My career trajectory isn’t perhaps as advanced as my peers, but I think that it’s important to be kind to yourself, something I’m learning as I’ve got older.  

It’s hard being ambitious in a body that doesn’t work as it should. Sometimes I’ve not sought out further professional opportunities and perhaps I would have made the transition to line manager sooner if I’d had the same good health as my peers, but who knows.  

I think having a life altering condition can lead to a change in mindset; I have learnt a lot about disabilities and believe that I can add some value to patient care with my life experience, and hopefully an extra level of empathy.

I’m certainly not more intelligent or conscientious than my peers but having a life changing illness since my teens has given me an extra level of resilience to keep going despite difficulties. I won’t pretend working with MCAS is easy, it may seem insurmountable at times, but by knowing yourself and adapting, it is achievable. 

As a result of my health condition, I have written articles and spoken at conferences advising dietitians on how to support other student dietitians with disabilities, including MCAS. I have been interviewed for a podcast and my university about how to navigate MCAS whilst working as a dietitian, to support and help raise awareness with both students and NHS workers.