My daughter may never be able to have children

I feel blessed to have five wonderful children. In the last three years, three of my children have finished year 12 with lots of choices in front of them and have been able to make their own decision on their immediate future.

Samuel, 20 is just finishing his second year at university studying history. Sarah 19 decided to work for a year and will start university next year and Matthew 17 decided to leave school at the beginning of year 12 and is studying at Tafe with the plan to go to university to study IT next year. My youngest Lauren is 14 a nd still at school but is considering all the possibilities after school life may bring her.

But for my first born Emily these choices were not available to her. Emily is 22 and was diagnosed last year with Systemic lupus erythematosus (SLE) or Lupus. Lupus is a chronic condition that results from a malfunctioning immune system. Lupus affects one in 700 Australians. More people have lupus than have AIDS, cerebral palsy, multiple sclerosis and cystic fibrosis combined.

Emily started to get sick at 16, when just starting year 11. She was coming home from school very fatigued and with severe headaches and going straight to bed. Test after test showed nothing. I took her to a rheumatologist, paediatrician and other specialists but after over 12 months still no diagnoses. (One specialist advised she probably had Chronic Fatigue Syndrome and to go home, rest and come back in ten months if not better).

Emily made the decision to leave school at the beginning of year 12 (she missed most of year 11). Over the past couple of years she has tried to study a few times from home, but her concentration levels are poor and the fatigue increases.

After 18 months of illness her local doctor referred her to the rheumatology clinic at Liverpool hospital. The specialists at the clinic showed concern and compassion for Emily but still no diagnoses or suitable treatment. At times it was suggested by doctors it could be lupus, but she didn’t have all the criteria for a diagnoses.

But late last year at the ripe old age of 21 Lupus reared its ugly head. Joint pain and swelling, increased fatigue and much more. Finally a diagnosis of lupus and treatment started. It may sound strange, but we were so happy for her to be diagnosed, after spending years on Google looking up symptoms and trying many healthy alternative treatments, we were glad she had ‘something’. There were many times before diagnoses she felt like nobody really understood and that some may not have believed how sick she felt because, as some would say “ but you don’t look sick” (although

now she wishes she could go back to before she was diagnosed – lupus is not something to wish for). To try and get a little understanding of lupus and the associated fatigue, it is worth reading The Spoon Theory by Christine Miserandino

The pain and fatigue associated with Lupus can be cruel and unpredictable. Current treatments don’t take away all the pain and can introduce unpleasant side effects. Sometimes it takes months or years to find the right medication. Lupus is a debilitating disease with no cure and can bring along other illnesses with it. (Emily also has underactive thyroid, gluten intolerance and fibromyalgia).

I am so proud of my daughter, the way she has coped and how she keeps on smiling, always try to be positive. She has met some great friends through lupus support groups and some of these young women have more severe forms of lupus than her. One of her close friends is struggling at the moment with her illness as lupus is also attacking her brain.

Emily is starting to plan her future with her boyfriend but there are so many unknowns. Will her lupus go into remission? Will she be able have children? My daughter is one of the lucky ones, with lots of support from family and friends; and a wonderful, supportive and loving boyfriend. Others are not so lucky.

There are so many young people out there struggling with chronic illnesses such as lupus. More research is required to find a cure and better treatments. These young people, particularly young women also need more community support programs.

Please donate at Lupus NSW or the Garvin Institute.

Julie Noordhuis is a 48-years-old full time project manager and mother of five children aged 14 to 22 and who all still live at home with her. By sharing her story she is hoping to raise awareness of lupus and the impact it has on young women. She is also hoping organisations researching treatments gain more financial support and try to find a cure for lupus and other autoimmune diseases.

Do you have any family members dealing with chronic illness?