Being the relative of someone with a disease as rare as PAP can feel very lonely. As Elisabeth, the mother of 15-year-old Julie, describes it:
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. 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.
Read Elisabeth’s personal story about her daughter being diagnosed with PAP – from her initial fears and frustrations when the disease hit her daughter up until today when her daughter’s disease is stable and they have found their way to live a good life with PAP.
Remember: Although being the relative of a person with a disease as rare as PAP may feel very lonesome at times, you are not alone. PAP Life is an online community where you can connect to other relatives. You can also contact your local lung disease patient association to learn more about support groups for relatives of people with lung diseases near you.
Although PAP is a very rare disease, many of the challenges which people with PAP – and their relatives – face are similar to the challenges of people with other chronic lung diseases such as e.g. chronic obstructive pulmonary disease (COPD).