She Went Undiagnosed With A Rare Immune Deficiency Disease For 19 Years, So Now, She Is A Rare Disease Patient Advocate Encouraging People To Speak Up For Themselves
These days, people are putting more and more emphasis on advocating for themselves when they go to the doctor or are seen by a medical professional.
After all, if you don’t speak up and demand proper help when you feel like something’s going wrong or something’s been overlooked, you never know what your doctor could’ve missed.
One woman, who is now a rare disease patient advocate, recently went viral on TikTok after sharing the story of how she went undiagnosed with a rare immune deficiency disease for 19 years.
Ilana (@ilana_jacqueline) is an author, influencer, and patient advocate who went through almost two decades of stress as she struggled to receive a clear diagnosis of what was going on with her. She shared a bit of her story on TikTok, and it serves as a great warning to speak up when it comes to your medical care.
“I don’t know who needs to hear this today, but just because your blood test came back ‘perfectly normal’ does not mean that you are perfectly healthy,” says Ilana at the start of her video.
Ilana explains that as a kid growing up, she was always getting colds and sinus infections. She also had asthma.
Concerned, her mom would take her to doctors who would run various tests. Nothing alarming was found, even when she was once hospitalized for pneumonia.
When Ilana turned 18 and still was constantly getting sick, she decided to start taking matters into her own hands and visiting specialists. She spent her entire first year of college visiting all sorts of doctors and specialists.
She was constantly dealing with gaslighting doctors and was coming close to giving up on seeing anyone else, ready to settle for a life of medical mysteries.
sepy – stock.adobe.com – illustrative purposes only, not the actual person
But then, her stepdad met an infectious disease doctor, and she figured she’d meet with him and give everything “one more shot.”
The doctor looked at her massive collection of medical records and, much to her surprise, told her he may have an idea of what she had been dealing with.
After running some additional tests, the doctor contacted Ilana and told her she had primary immune deficiency disease.
He also told her to get to a hospital right away to get an infusion, as it was as if she had no immune system at all. By the time she was 19, Ilana had finally been diagnosed, but her story didn’t end there.
“This doctor, wonderful as he was for diagnosing me, couldn’t treat me,” Ilana explains. “The treating doctor for this condition is an immunologist, so I had to go out and find one of those.”
Unfortunately, Ilana struggled to find an immunologist who knew enough about her disease and could properly treat her.
Her first doctor did not give her an adequate treatment plan, and she ended up contracting aseptic meningitis.
After that traumatic experience, Ilana had to quit her current treatment and seek out help from a different immunologist.
The same thing happened, as the second immunologist used the current treatment plan she is on but was giving her improper doses of what she needed.
“Things are not going great; we do not know what we’re doing,” recalls Ilana. “We are the blind leading the blind. So after three months on this medication and not improving, we quit again.”
Finally, when she was 31-years-old, she found an immunologist who knew what she needed. Ilana points out that this kind of extensive treatment and the process of trying to replace parts of your body’s immune system takes some time and trial and error.
While she was diagnosed at 19, it wasn’t until years later that she was able to find something that worked for her and was able to get the treatment she needed.
“The moral of the story is: just because it’s undiagnosed, does not mean it doesn’t exist,” says Ilana.
“Just because you get diagnosed, doesn’t mean it’s gonna be treated. And if you’ve been sick your whole life, ask to be tested for primary immune deficiency disease.”
We’re so glad to hear that Ilana has finally been given the care she needs. If you’d like to learn more about her story or learn some tips from her as a patient advocate, you can read her book, “Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms,” which came out in 2018.
@ilana_jacqueline Part 1: how I went undiagnosed for 19 years #chronicillness
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