By Annaben Kazemi
Ida Wagner caught our attention when she commented on our Facebook page that she was reading IG Living magazine in Norway. “The magazine has so much information that I find useful,” says Ida. “I have several hard copies, but appreciate being able to access the articles online through the website.” Because the primary immunodeficiency disease (PIDD) population is so small in Norway, Ida began searching outside of her country for resources and information. She uses Facebook as a way to reach out to the larger worldwide community and connect with others who share a PIDD diagnosis. Here’s what else Ida had to say when we caught up to her:
IG Living: What is your diagnosis?
Ida: I was very lucky to get a diagnosis at all! I was 47 when I was finally diagnosed with common variable immune deficiency (CVID). I administer my own subcutaneous infusion of Gammanorm (similar to Gamunex in the U.S.) at home once a week, but more often when I am traveling. Getting immune globulin (IG) infusions have changed my life, enabling me to travel, swim and enjoy life.
IG Living: What is it like to have a rare disease in a country where less than 500 others have PIDD?
Ida: It's pretty lonely. I have a few contacts, actually one in my own country and one in Sweden, our “neighbor” country, who I can say are my friends. I have always looked pretty healthy outside, but I am struggling with the feeling of being alone and the isolation that an invisible disease brings. There are only five million people in Norway and less than 500 have been diagnosed with a PIDD. I know there are some other people with PIDD in my city (I’m in Oslo) but I don't know them. I have a membership with the Swedish Society, which is a wonderful way to get information by post and ordinary papers. Facebook is an absolutely amazing way to get in touch with people all over the world. We can all learn from one another and share information. It’s surreal to find we have so much in common with someone else, even though they may be a half way around the world.
IG Living: What have you learned from your U.S. friends on Facebook?
Ida: I have learned that having a PIDD in the U.S. can be extremely challenging economically. We have a completely different healthcare system in Norway, where we all get free medical help, dental help and free medications, as well as equipment. I have also learned that invisibility and isolation are barriers many people feel no matter where they live. It’s wonderful to be included and surrounded by brilliant, caring people online on Facebook, where I’ve found the most support. By reading and sharing with other people with CVID, it feels like we are one global community working together in our fight with this illness.
IG Living: What inspires you and keeps you going?
Ida: I feel that I am very fortunate to swim every day. I am able to get in a treatment pool at the University Hospital where it’s heated to a temperature of 96.8 degrees Fahrenheit. I do exercises in the pool every day with instructions from a physiotherapist and the help of two nurses. I feel this is one of the wonderful things that helps my body to heal and keeps me going every day. As far as I know, I am the only adult outpatient with the diagnosis CVID who’s using this treatment pool. The results while using the pool for the last two years have been very motivating for me.
IG Living: What would you like others living with a PIDD to know?
Ida: I would like others to know that it’s important to be your own advocate. Never give up: You know your body better than anyone else. It took years for me to get my diagnosis. I had doctors tell me it was all in my head and that my problems were psychological. Through persistence, I finally found a doctor who listened and I was diagnosed by the medical chief of immunology and infection at the Oslo University Hospital. My message is to never ever give up your fight to get the right diagnosis and the medication that can change your life.