A woman who suffered from constant infections with no explanation has revealed how it took doctors 19 years to diagnose her with a rare immune deficiency disorder.

Ilana Jacqueline, 32, from Portland, Oregon, US, was born with hypogammaglobulinemia, a rare condition that makes it very difficult for her to fight off common infections.

However, she didn't experience symptoms until age seven when she was hospitalised after contracting pneumonia and suffered a collapsed lung.

Unfortunately, this was just the beginning of Ilana's nightmare, which has lasted nearly two decades.

In the following years, she would struggle to recover from infections, colds and viruses that her classmates bounced back from after a day or two, eventually leaving her burnt out from the constant exhaustion and pain.

“I just knew this wasn’t normal,” Ilana, a patient advocacy strategist, told Jam Press.

“By the time I turned 18 I was so physically burnt out I didn’t know how much longer I could keep going.

"It became clear that there was something seriously wrong.

“I got in everywhere I could [with doctors]. I saw internists, pulmonologists, gastroenterologists, ENTs, and even took out credit cards to get in with concierge doctors to help me solve the mystery.

"Some of my doctors assumed I must be faking my symptoms or not taking my antibiotics.

"They told me that some people were just 'sickly' and that I should just be grateful things weren’t worse."

One doctor told Ilana her symptoms were due to stress and despite her doubts about this diagnosis, she went to therapy and was prescribed antidepressants.

She said: "They told me that if I just managed my stress better or talked to a therapist, this would all go away.

"They told me I was attention-seeking, which I was.

"I was seeking medical attention for a disease that was destroying my body."

Ilana's mother, Carri, a TV producer, even changed jobs so she could work in a research capacity spending hours learning about rare medical conditions in the hopes of pinpointing a reason for her daughter's struggle.

She ended up creating the show Behind the Mystery: Rare and Genetic with 100 episodes of educational programming on rare diseases.

However, the family still had no answers on how to treat Ilana.

In 2009, a chance meeting changed the then teenager's life as her step-dad ran into an infectious disease specialist at their local synagogue.

She said: “I didn’t want to go to the appointment with him.

"I had completely lost faith that anyone could figure out what was happening to me.

"At that point I could barely walk on my own, I was so weak.

"My parents each slung an arm around me and carried me into the exam room. I’m so glad they did.”

Soon after, she was diagnosed with hypogammaglobulinemia, a Primary Immune Deficiency Disease (PIDD) which causes her to catch infections easily and struggle to fight them off.

Despite the severity of the condition, Ilana was “overjoyed” to finally have some answers.

She said: “I wasn’t a hypochondriac. It helped me trust my instincts in a way I never felt I could before.

“I was already suffering but now I had a name for what I was suffering from and a treatment.

"I was relieved.

“PIDD causes me to catch infections easily and to have a really hard time fighting them off and recovering from them.

"One round of antibiotics is never enough to fix the problem.

“I don’t get fevers as part of my condition, so it’s hard to know when an infection has gone from a mild one to something very severe and that usually happens much faster for me than for people with fully-functioning immune systems.

“I also feel motivated after years of being medically gaslit.

"I think medical gaslighting can do two things: it can either depress you into not seeking out help or it can motivate you to fight harder.

However, the experience of living without a proper diagnosis for so long has left its mark on Iliana.

She added: “I still get nervous going to new doctors because of what I experienced in the past, but I have to deal with that head on.

"My survival depends on it.

“I also developed dysautonomia (autonomic dysfunction) and am permanently scarred from a sepsis infection I had in my early twenties.

“But overall, I have more energy and hope about the future than I ever could have had before my diagnosis.

"Every bit of advocacy I do is in the hope that the next patient with an invisible illness doesn’t endure the same amount of disrespect and indignity I had to.

"We have to do better than this for every patient.”