My Story

My 11 year old daughter got PAP

When Elisabeth’s daughter, Julie, was diagnosed with pulmonary alveolar proteinosis (PAP) at the age of 11 it turned Elisabeth’s life upside down. Four years and five lung lavages later Elisabeth is happy to say that Julie is feeling better than ever.

When Julie was 11 years old her mother Elisabeth noticed that her daughter was having difficulties breathing. She took her to the doctor and got the answer that it was asthma. But the breathing got worse and Elisabeth continuously took Julie to see several different doctors. After six months, Julie was finally diagnosed with PAP.

“I was in shock when the doctors told me that my daughter had a very rare lung disease. It scared me, because I didn’t know what it meant. And the doctors couldn’t even tell me. PAP is so rare that only few people know anything about it.”

No one to share experiences with

Elisabeth vacuumed the internet for the little information she could find about PAP. And she panicked. It didn’t sound promising at all. Although Elisabeth could talk to both her husband and her mother about her thoughts and worries, she still felt very isolated.

“The worst thing was that I had nobody to share my experiences with. No one to tell me about what I could expect – for Julie, for us as a family, for future plans. There was no one in the same situation as I because of the rarity of the disease. Actually, I was the only mom in the whole the whole country who had a child with PAP.”

Fighting to control the disease

Luckily Julie was referred to the only expert in PAP in the country. He could explain what PAP was all about and answer all the questions that Elisabeth and her family had. He could also assure them that it is normally possible to stabilize PAP – although it can take some time. And it did take time for Julie. The next year or so the little girl was in and out of hospitals, having whole lung lavages and getting oxygen and medication with GM-CSF.

“I quit my job as a teacher to be able to be there for Julie. I was even hospitalized with her several times. Mostly just for a day or two. But once we stayed in hospital for five weeks. I didn’t leave the hospital at all and slept on the ward. Don’t ask me how I managed, I just did.”

Took over my life

And Elisabeth managed a lot. She wanted to be available at all times in case Julie needed her. When it was at its worst, it became almost like an imprisonment.

“Julie’s condition took over my life. No matter if Julie was in hospital, at home or in school my life was all about looking after her. I couldn’t even go shopping. The shops are half an hour away and I would risk that Julie would need me. So I couldn’t really do much.”

Finally stable

Today, Elisabeth has found a way to be a mother to a PAP patient. She now knows the warning signs, so she doesn’t have to worry all the time. And she is good at staying positive, even when Julie worries.

“Julie’s condition has stabilized. She hasn’t had any operations for years and she recently came off the oxygen. Now she attends school fulltime, is studying for her exams and is more or less like her friends. It is so comforting to experience that PAP actually does stabilize over time. In the beginning it was up and down and very confusing. But now I feel we are in control.”

The end

Read Julie’s story about being a young PAP patient

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