Seven years ago, my daughter Gabby was diagnosed with Takayasu arteritis. She turned white overnight just before New Year’s in 2018. I looked at Gabby and was shocked by how pale she looked suddenly. This was on a Sunday. Gabby said she felt fine and did not feel unwell, so I waited until Monday to take her to our regular general practitioner (GP). He looked at her and said, “blood test?” He was shocked by how pale she was. He checked her over and while Gabby said she felt fine, her heart murmur had changed so our GP gave us a referral to a cardiologist.
We went and got the blood test done and booked to see the cardiologist on the Thursday. By the Wednesday before the appointment, Gabby was in pain. Her tummy hurt each time she ate or had something to drink. On Wednesday afternoon, we received a call to go and talk about her blood results. They were not good. Gabby’s haemoglobin was very low, and her C-reactive protein (CRP) was extremely high.
Our doctor gave us a referral to a gastroenterologist. We got home and they were closed, so we had to wait to make an appointment. We went to the cardiologist as planned on Thursday and he was shocked by Gabby’s blood results. He did an ultrasound and said everything looked fine. He asked if we were seeing someone else about her bloods. I told him I was going home to call and make an appointment with the gastroenterologist, so he rang their office there and then as he said this was very urgent and got us an appointment first thing that Friday morning.
By Friday morning, Gabby was struggling a lot with pain, and I had to put my then almost 9-year-old in a stroller as it was too difficult for her to walk with the amount of pain she was in. We got to the gastroenterologist and he asked, “Oh my god, when were these bloods taken?” I told him they were done on Monday afternoon. He felt her tummy and asked Gabby where it was hurting. She kept telling him it didn’t hurt while holding her breath as he felt around.
Gabby was tough, but I told her she had to be honest and tell the doctor where it was hurting. After he examined her, he said she needed a colonoscopy and gastroscopy to see what was going on as she had very little blood. He sent us across to the hospital for the day to have a blood transfusion as he could not do anything until she had more blood in her body.
Over the weekend, Gabby prepared for the colonoscopy and gastroscopy and Monday morning, we went back to hospital to have the procedure with the hope of finding out what was wrong. From that point, it was full on with non-stop tests and seeing other specialists.
Gabby was very sick and in constant pain with fevers. She was barely able to eat and was losing weight rapidly. She had multiple blood tests, urine tests, X-rays, ultrasounds, computed tomography (CT) scans and a magnetic resonance imaging (MRI) scan over a five-and-a-half-week period. We were then told Gabby needed a positron emission tomography (PET) scan.
We knew this meant Gabby had something serious and were terrified. After getting the results, we saw the rheumatology team who explained Gabby had vasculitis, but they weren’t sure what type. They admitted Gabby for aggressive treatment and performed a magnetic resonance angiography (MRA) test, which showed the type of vasculitis. The result was Takayasu arteritis and we were told not to expect to meet another child in Australia with this type of vasculitis. The team gave us one and a half pages of information as that is all they knew about it.
After Gabby’s initial treatment, we were discharged and sent home with medications to help manage the disease. We felt lost, alone and terrified. Our baby girl had to endure so much. We felt she had been robbed of her childhood. Gabby was very unwell for most of 2019, missing a lot of school, giving up dancing, and not enjoying playing and going out like she used to.
Within six months of being diagnosed, Gabby developed pain in her legs every time she walked, and this caused her to struggle daily even with enjoying normal little girl things. In 2020, she had a flare up, experiencing similar tummy pain and her CRP had gone back up. Gabby had another PET scan, and her treatment medications were changed to try and get the disease under control. But the leg pain wasn’t going away.
In late 2020, after exhausting Google, the only thing I could find to match her leg pain was claudication. I suggested this to her rheumatology team, so they felt Gabby’s pulses while she was lying down on a bed and said everything felt and sounded fine. Her blood results were also good. So, we just continued with Gabby tolerating the leg pain and continuing with her treatment and regular check-ups every eight weeks.
In January 2021, we went in for another check-up. The medical team asked how Gabby was doing and as usual, I said she is doing well—her bloods are good but the pain in her legs is still there. Gabby didn’t feel the team believed her. Again, they got her on the bed, felt her pulses and this time, her lower limb pulses were very faint, so we got a referral to a vascular specialist to have a doppler ultrasound done.
The ultrasound showed Gabby had stenosis in her infrarenal artery and her right internal carotid artery causing claudication. The report suggested to follow up within six to 12 months, but no follow up appointment was made.
Gabby started to feel quite sick in the tummy in late 2021. This was put down to anxiety. In 2022, Gabby got her ears pierced and ended up with staphylococcus. We saw a paediatrician who was kind and caring. I told her I really wanted to follow up on Gabby’s vascular scan as it had now been 15 months. We got the referral and the doppler was done again from head to toe. This time, Gabby’s infrarenal was occluded but her body had remarkably created strong collaterals.
I asked the vascular specialist if the occlusion could have made Gabby feel really sick at the time and he said most definitely. So, back when I was told Gabby had anxiety, it was likely really the artery closing up and her body working hard to fix it.
Since that incident, Gabby’s rheumatology team has been on top of everything, monitoring her more closely and paying more attention when she doesn’t feel quite right.
In July 2024, Gabby felt unwell with chest and shoulder pain. She had dopplers showing she had developed quite significant stenosis. The rheumatology team arranged for her to have an MRA. As we were waiting for a booking, Gabby started to feel a bit tingly on the side of her face. I rang our nurse and she asked us to go to hospital that day. We got in for the MRA thanks to a wonderful lady staying back and working overtime to do the scan for us.
Gabby stayed in hospital for a few days, and her treatment was changed. Things were going well until Gabby experienced high blood pressure. A doppler was done on her renal arteries and they had gotten worse, so Gabby is now on blood pressure medication. Her fourth PET scan showed her disease has not progressed any further, which was great.
In November 2025, Gabby felt a tight, squeezing feeling in her left arm, which was sore. All her bloods were normal, and we had just done a whole heap of dopplers. There has been some progression in the left proximal to mid subclavian, along with a long segment left axillary artery stenosis that had not previously been imaged. They have said there is high grade disease.
We recently saw our specialist and are now set to have a CT aortogram. We’ll also see a vascular surgeon to discuss a balloon angioplasty to the axillary and subclavian arteries and the abdominal aorta. If successful, it may provide at least medium-term improvement with the claudication, which would allow Gabby to feel better and may allow her to participate in regular activities and casual work. Fingers crossed it all goes well, and I get to see my baby girl be pain free. If it doesn’t work, there won’t be any further surgeries, and our focus will be on pain management.
We have just been rejected for the National Disability Insurance Scheme (NDIS) even though our doctors have written multiple letters outlining Gabby’s condition. The letters explain that she has a permanent disability and struggles to do anything without pain. They make it clear that Gabby requires physiotherapy and occupational therapy, along with help at school as we cannot give her medications to manage her attention-deficit/hyperactivity disorder (ADHD). This makes life more difficult. It can be very exhausting for us as parents and yet, we have no help at all. Not even a health care card.
It’s very difficult to not have anyone else in Australia to relate to. We have a very large family, which is great but at the same time, they don’t fully understand what we are truly going through.
