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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

sepy - stock.adobe.com - illustrative purposes only, not the actual person

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

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