Naazneen's story

Some of my earliest memories are of St. Thomas' Hospital, my mum and I used to visit quite regularly. We were not visiting anyone in hospital, my mum was getting treatment for Lupus.

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After many years we moved to the USA because the climate was warmer and that was good for my mum. She seemed to get better and everyone was very hopeful that her condition would continue to improve, it did and we were all very happy.

When I was 14 I started to have trouble getting out of bed in the morning, I was always tired and irritable. Then I started having trouble physically; my knees would hurt and I was constantly having bad headaches and joint pains. The doctors in the USA tested me for many different things, including lupus. I was diagnosed with juvenile rheumatoid arthritis, no other results came back and I continued to suffer with many other ailments. I'm sure that many people, including myself at times, thought I was a hypochondriac, but I was in pain all the time.

Years went by and I learnt to cope with the different aches and pains and constant fatigue and put most of it down to the arthritis.

In 1996, when I was 22, I moved to Bermuda and was flying and quite often back and forth from there to Los Angeles. I had a sharp pain in my right calf one morning and then it started to swell and get extremely hot. The doctors did not know what was wrong until they did many different tests and scans and found that I had a deep vein thrombosis. Once admitted to hospital for treatment I was seen by a specialist and told that my blood was 'not normal' for someone with a DVT. Many tests were done and a haematologist came to tell me that I had Antiphospholipid Syndrome. She explained all the ins and outs of the condition and told me that I would be on Warfarin for life.

Over the next few years I had 3 early miscarriages and was told this was part of my condition. In time, after being tested for many other conditions, including multiple sclerosis, I moved to London and started going for treatment and anti-coagulation at the Royal London Hospital. When visiting the consultant in 2000 I mentioned that I had a pain in the right side of my chest. I was sent for X-rays and an ultrasound. They found a pulmonary embolism and I was admitted for immediate treatment. During my stay at hospital, the consultant explained to my husband that I had now developed Systemic Lupus Erythematosus (SLE) as a primary condition and Antiphospholipid Syndrome secondary. Treatment on anti-malarials was started and I was given other medication for anti-coagulation.

In the summer of 2001 one of my cousins was also diagnosed with SLE. She was only 10 years old and is, to this day, being treated with steroids. I am still being treated for both SLE and Antiphospholipid Syndrome. In July 2001 I miscarried a baby boy at 23 weeks. The doctors had tried to give me full anti-coagulation, but a blood clot developed in the placenta. In December 2002 I miscarried again at 12 weeks. This time the doctors had tried everything possible to try to have a successful outcome. By now I had a total of 8 miscarriages.

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On September 11th 2003, our son Sean was born at 29 weeks.  He was my ninth pregnancy.  Born at 970g and measuring just slightly longer than a pen, he spent 13 weeks in the NICU and came home after 15 weeks.  He was a mini-celebrity in the hospital as my story and his birth were featured on BBC’s “City Hospital” – we were invited back on the show when he was a year old to show how well he had progressed.

The amazing staff at the St. Thomas’ Lupus unit helped us to finally complete our family!  My pregnancy was monitored extremely closely, using the most up-to-date information and medication available.  I had ultrasounds and doppler scans every 2 weeks after I reached 18 weeks and then every day as I got closer to his birth.  Everyone worked together to make sure that we had the best care we could ever have asked for.

We moved to Florida in 2005, hoping that the weather would be better for my joints and general health as I did have several major flares after Sean was born.  We have been in the U.S. since then and now live in Massachusetts.  

Sean is now almost 15 and towers above me!  He is a typical teenager and I have to remind myself that he is our miracle child when I sometimes want to wring his neck!  He is heading into high school and it’s hard to believe the preemie that was so fragile is now a young man.  

My lupus is being treated with anti-malarial drugs, immunosuppressants and the Benlysta infusion monthly. I have found over the last 18 years since my diagnosis that the flares and especially the organ involvement for me appear to be cyclical.  I can go for long stretches of time and be completely “fine” and then have several months of severe joint pain or organ inflammations.  I have also been diagnosed with Fibromyalgia.  This can explain more of the nerve pain and aching that I experience.  

My husband Andy and I are constantly reading about Lupus and Antiphospholipid Syndrome and try and raise money where we can for research. He has been extremely supportive during many ups and downs in living with these conditions.

Lupus is still a fight that I have to win every day, but we keep fighting, learning and most of all living.  I have become involved with several support groups and the Lupus Foundation of America which hosts the Walk for Lupus Now events all over the country.  Andy and I were lucky enough to sponsor the inaugural walk in Tampa, Florida.  Every 2 years I go to Washington D.C. for the Lupus Advocacy Day to lobby to lawmakers for funding for Lupus research and to educate lawmakers about what this disease means and how it affects us and our caregivers.  All in all, I am a very lucky lady!  As we always say, I may have Lupus, but Lupus does not have me.  

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