Efi is one of around 50,000 people in the UK who suffer with systemic lupus erythematosus, more commonly known as lupus. Pregnant women with lupus have an increased risk of complications during their pregnancy such as premature birth, miscarriage and pre-eclampsia.
Having Lexi
“My daughter Lexi was born in September 2014 but it wasn’t a straightforward journey. I’d had five years of intensive treatment after I was diagnosed with lupus in December 2002, when I was 24. One treatment included a form of chemotherapy to help bring lupus under control.
“My husband, Sam, and I were aware of the issues that are associated with lupus and pregnancy. I knew there was the possibility that I would have a physically small baby because there was a chance that not enough blood would go to the placenta. There was also a possibility that we wouldn’t be able to go through with the pregnancy because there was a risk of renal failure as the pregnancy would put a huge strain on my kidneys. Luckily none of this happened so I would say we can be considered a success story.
“Part of having lupus means that I have blood clotting issues so getting past the first trimester was really important. The first thirteen weeks were terrifying for us because there’s an increased chance of the pregnancy not being successful. I was monitored closely throughout the pregnancy by a team of consultants and midwives and had injections to ensure my blood didn’t clot. Amazingly, Lexi arrived safe and healthy.
“There was a chance that the lupus could flare up post-pregnancy. Luckily for me, I wasn’t affected by it whilst pregnant and it has so far remained dormant. Although I feel tired, I feel pretty good which is amazing. I think it’s a real indication of how good consultants and team work can help you post-pregnancy as well as during.
“I first heard about the Sparks funded research project investigating the links between still birth and lupus when I attended a Lupus In Pregnancy clinic to discuss the possibility of having a baby. I was happy to take part in the research knowing it could help other pregnant lupus patients in the future. Being involved in the project meant that I had extra blood tests every time I attended the clinic and my bump measured as well as ultrasounds to check the baby was developing well and a good size.
“We need more research otherwise how do you go forward with any treatment? So many other conditions are now dealt with better thanks to research and it’s really important that it’s carried on. Especially with rare conditions that don’t necessarily affect a huge amount of people, it is great to know that it is being looked at. Any severe illness is devastating and the feeling of being unwell is so profound. If it helps other people going through it, then I think that’s fantastic. Taking part in the research was reassuring too. Lupus aside, any mum-to-be wants to know her baby is ok!
“Please keep up the good work because to know that for Lexi’s generation, and generations further down the line, there will be more answers to questions and improved treatment for sufferers is a hugely comforting thought.”
Find out more about Sparks research project investigating the links between lupus and still birth.