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Posted on 10. June 2013

IG Living Fan Spotlight - Ida Wagner

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.


Comments (8) -

Dale Cook
4:07 PM on Thursday, June 13, 2013

I am glad to see you interviewed my friend, Ida.  She is an awesome person and always upbeat.  Great job, Ida!!

Kim Tweedy Stone
6:38 PM on Thursday, June 13, 2013

Ida is a wonderful person with a heart of gold. I met her in CVID, and she was so helpful to me. I consider her as family. She is a strong Zebra and fights her way through this chronic and sometimes disabling disease with such grace. Ida will be my friend for life.

4:11 PM on Friday, June 14, 2013

I am so glad you were able to be diagnosed and have found a broader community through IG Living. Even though I live in the US where CVID diagnosis is more common, many of us struggled for years before finding the right doctor and diagnosis. Like you, I have CVID. I receive IVIG in my doctor's infusion center once a month.  Even though I have met a number of people with CVID, I am not in day-to-day contact with them, so the IG Living community has been wonderful for me as well. Wishing you well!

5:54 AM on Saturday, June 15, 2013

I met Ida through our PIDD sites here on FB and she has much knowledge to share. SO glad you did this blog on her.

8:37 AM on Saturday, June 15, 2013

What an inspiring interwiev, thank you, Ida my friend,best wishes from Iceland

Kim Taylor
9:40 AM on Saturday, June 15, 2013

Ida Wagner is one of the most intelligent & educated person I know on CVID.
I had the pleasure of meeting her through Facebook. And, I learned so  from her.
See is an asset to the PIDD/CVID patients through out the world.
She is always ready to share information & help to others.
I have talked with her in some time; and I miss her.

Linda Thornrose
10:05 AM on Tuesday, June 25, 2013

Loved the interview with Ida and the following comments.  I have to admit to feeling alone with CVID except for IG Living folks.  I, too, have learned so much from others and feel it is the place where I can find folks who believe and understand what living with PIDD is.  I know no one who has it other than here.  My immunologist left the state a few years after I was diagnosed and started treatment.  There are no others in our area, so I asked one of the hematology/oncology docs I used to work if he would oversee my treatments since protocol was already in place.  I am most grateful, but would be happy to have an immunologist (who treats adults) so I would feel I was keeping up with at the latest research, etc.  I do believe my oncologist does keep up as well as he can, but he certainly has his hands already full with hem/onc!  At any rate, I say all this to say how grateful I am to have all of you on IG Living to keep me from getting so lonely in dealing with treatment, disease, complications, etc.  Thank you from my heart.

Lisa Churinskas-Hulit
7:00 AM on Friday, June 28, 2013

Ida is a wonderful person, and her presence on Facebook is an inspiration to all of us Zebras!

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