All Lyn wanted was to be healthy enough to play with her grandchildren
By Jo Abi|
Lyn Barker was diagnosed with myelitis, or inflammation of the optic nerve, in her twenties, but she didn't let it slow her down.
She travelled the world and then met now-husband David, with whom she started a family.
It wasn't until she began experiencing suffering from multiple chest infections later in life that her health began to decline.?
"It was in my thirties that I started to get a lot more chest infections," she tells 9Honey.
READ MORE: Something inside Candice 'exploded' the moment doctors cut into her?
"I'd get sick quite often, and it would take a long time to recover."
She mentioned to her doctor she thought there may be something wrong with her immune system but her concerns were dismissed, despite the fact she is a nurse midwife.
Then she caught whooping cough, and everything changed from there.?
"I had a dreadfully sore chest and cough. I'd cough until I'd vomit so I ended up with malnutrition," she recalls.
"I couldn't keep anything down and it was difficult to breathe. It went on for months.
READ MORE: Prince George, Princess Charlotte and Prince Louis' rare outing
"I was briefly hospitalised, but mostly managed to stay home."
She describes that year as "just a blur in my life".
"?From 2008 I had to retire and spent the next nine years in and out of hospital, staying for 10-14 days and six admissions annually, just recovering. I took a lot of antibiotics," she says.
"It's challenging for everyone, for you and for your family. I've had good support. I've been very fortunate.
"Having grandchildren has given me the motivation to push on. And I have a really good medical team who have been really supportive."
READ MORE: Our favourite stick vacuums for every budget
Lyn went to see a gastro-intestinal doctor, who referred her ?to the infectious diseases unit.
Desperate to get to the bottom of her health problems, she also emailed specialists in the US for help.
?Lyn was eventually diagnosed with compromised immunity or primary immunodeficiency (PI), a genetic condition.?
"I was missing elements of my immune system,. All it took was a simple blood test and to know what to test for."
PIs aren't well recognised in the medical community, with the Australasian Society of Clinical Immunology and Allergy (ASCIA), and patient/carer support organisations, Immune Deficiencies Foundation Australia (IDFA) and AusPIPS, calling for early and accurate diagnoses and targeted medical treatment for sufferers.
They are estimated to affect one in 25,000 people, with 70-90 per cent of sufferers around the world remaining undiagnosed.
READ MORE: Kevin Costner's demanding filming schedule was 'hard' on wife Christine
"Unfortunately, access to genomic testing for primary immunodeficiencies is not currently equitable across Australia, which means that many people are not receiving the potentially life-saving care and treatment they need," Dr Melanie Wong, a paediatric clinical immunology/allergy specialist and co-chair of the ASCIA Immunodeficiency Strategy says.
There are well over 200 types of ?PIs. In Lyn's case hers doesn't produce antibodies which means immunisations are not effective on her.
She has to remain vigilant during COVID and every flu season?.
"I have intravenous immunoglobulin treatment and have done for twenty years," she says.
Lyn used to have to undergo the procedure in hospital but is now able to self-administer at home.
"It's much better. When I travelled, I used to have a permanent PICC line in my arm so I couldn't swim. Now that I can do it myself I have a lot more freedom."
?She's also found her health has been "more stable."
Her prolonged periods of illness left her with lung and heart damage, osteoporosis, diabetes and ongoing gut issues.?
"But I am very proactive," she explains.
"I want to try and protect my own children who possibly have this and my grandchildren who may have an immunodeficiency.
"I don't want them to have a delayed diagnosis because that seriously impacts your life."?
For a daily dose of 9Honey, subscribe to our newsletter here
