By Alyce Collins
THIS WOMAN believed she had TEN YEARS to live after being diagnosed with lupus but has surprised everybody by outliving this and having a baby despite suffering LIFE-THREATENING complications after giving birth.
Attorney and blogger, Paula Birch Bilingsley (29) from South Carolina, USA, saw her weight drop over a stone in just a month before being diagnosed with scleroderma and lupus, because doctors refused to believe she was ill.
For years, Paula was prescribed anti-depressants for her symptoms including anaemia and high liver protein count as doctors didn’t regard her as sick because she didn’t physically look ill.
While studying at university, Paula lost 1st 4lbs going from 9st 4lbs to just 8st in just four weeks, which finally led doctors to run tests, which revealed the illness which was causing her immune system to attack itself.
Scleroderma causes excess calcium and scar tissue on organs, resulting in bruising all over Paula’s body, fatigue, red spots on her skin. Paula’s lungs are now half formed of scar tissue which makes her heartbeat faster than usual.
After going through so much trouble with her health already, Paula and her husband gave up their dream of having children of their own, instead choosing to adopt. In 2016 they adopted their daughter Evy, and their dream of being a family was realised.
However, then in 2017, just as Paula’s husband was about to be deployed with the military, they got the surprise that Paula was in fact pregnant with their son, who was born in October 2018.
Being pregnant with lupus can be incredibly dangerous for the mother and the baby, which meant that Paula had to take daily injections throughout her entire pregnancy to stop the placenta from clotting and killing her unborn baby.
“I was originally diagnosed with scleroderma in 2009 while I was in university,” said Paula.
“At the time, I was a healthy and active young woman. The visible effect is what finally prompted a diagnosis because before that, any complaints were ignored, or I was given anti-depressants. I was suggested anti-depressants at only 18.
“Once labs were run, it was clear that something was wrong. I had a high ANA count, anaemia which produces low iron levels, and liver proteins which showed that the liver could be in danger.
“Scleroderma can cause excess calcium and scar tissue on any organ, causing shrinking of the mouth, receding of the lips, trouble swallowing and severe reflux. It can seem invisible on the outside, but a look inside can tell a different story.
“Many of us have to use handicap services and yet we look young and healthy to a stranger. Rude comments are common challenges we face. The body often attacks major organs, creating scar tissue until they fail.
“Lupus prevents me from spending time in the sun because that can cause a flare up of my symptoms. There is no cure for this disease or getting well soon, which is very difficult to accept.
“I have dietary restrictions and get pain when I eat, I have to take daily medication as well as injections every week. My raised heart rate causes fatigue, and I also get Raynaud’s, which is loss of circulation in limbs.
“We had stopped trying and we adopted. Adoption was the most amazing experience and we got to be there for every pre-natal appointment, the birth and bringing the baby home from hospital. Evy was an easy baby and we were so happy.
“Despite lupus and scleroderma making it incredibly unlikely that I would ever carry a child, after years of trying, we were surprised by a pregnancy. I had a deep feeling that everything would be fine.
“I had to take daily injections to prevent the placenta from clotting and killing the baby.
“Pregnancy lowers your immune system and so I actually felt better while I was pregnant. Once my tight skin stopped expanding that is, but there wasn’t room for the growing baby, so we had to deliver him early.
“The baby was healthy, but lupus caused bleeding complications in the hours after delivery and I had to have emergency surgery and blood transfusions.
“My son was born at 36 weeks, needing no special care at all. He was over 5lbs and he went home two days later.
“The bleeding wouldn’t stop so they put me under and did an emergency procedure to see what was going on. They gave me drugs to help the blood clot and gave me two units of blood before it stopped.
“When I was diagnosed with scleroderma, the life expectancy was about ten years. Today, I’ve surpassed that mark.
“What helped me was finding a good doctor and staying active. I think the strides made in research just during the time I have had it, meaning new medicines, bring hope that we will find remission for many people. Maybe even a cure one day.
“People should be aware that you can’t see all handicaps. Just because it’s not in your face, doesn’t mean it’s all in my head. See me on a bad day – look at my labs and X-rays and it will become obvious.
“Scleroderma has no cure and it kills otherwise healthy young people. We have come from no options to new medicine just in the last ten years.
“Autoimmune diseases are so similar, so research for one can help others too. If you have on, stay active with things like yoga. If you don’t do things you will stop being able to do them forever.
“Advocate for yourself by finding the best doctor you can who knows the disease – knowledge is power.”
You can follow Paula’s Instagram page for more details about living with an autoimmune disease, @birchbilingsley.