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Posted on 5. July 2012

From Teacher to Advocate

By Annaben Kazemi

I am a teacher. I’ve always been a teacher. Nothing excites me more than sharing my knowledge with others. I love breaking down complex concepts so they can be understood. When I’m teaching, there are moments when I see a light bulb go off that tells me whether the concept I am teaching has taken root. It is the single most rewarding part of teaching to know that I have helped in some way - especially when difficulties have been overcome. Teaching is more than just imparting knowledge; it’s mentoring students, seeing the big picture that surrounds them and advocating for them. For me as a junior high school teacher, it also has been about teaching students to advocate for themselves. And, that’s what makes this transition to my new role so easy.

As the new patient advocate, my role as a teacher has become more defined. I may no longer be in the classroom, but I am still a teacher. I may no longer be teaching algebra or language arts, but I’m teaching something about the complex world of immune globulin (IG). I am excited to use my advocacy skills toward a cause near and dear to my heart, enriching the lives of those living in the diverse IG community that my family has been a part of. Fourteen years ago, two of my children were diagnosed with primary immune deficiency disease (PIDD). I remember all too well the isolation and fear that gripped our lives as we struggled to make sense of the situation. It was in reaching out to others and sharing our common experiences that I found the ability not only to cope, but to help my children thrive.

The journey hasn’t always been easy, but the constant has been the support we draw from those within this community. What other community can you turn where people “get it” instantly when you say: “I’m so tired of hearing ‘But you don’t look sick!’?” I remember reading the first issue of IG Living magazine more than six years ago and being thrilled to have a forum for topics that affect our community. The irony here is that my PIDD daughter was featured in a picture in that very first issue in an article about the importance of being a part of a supportive community. The little girl she was photographed with is still very much in our lives. They have grown up together and have supported each other despite living far apart in two different states.

I never imagined this is where the journey would lead us. I consider it a privilege to share my knowledge and to continue to learn within the community I’ve been a part of since my children were diagnosed. Living with a chronic illness has its own unique set of challenges. I hope through our shared experiences to become a support and a resource for our community. I know that everyone’s journey is different, and I am looking forward to getting to know you and hearing your story.

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Comments (8) -

Dayna
3:59 PM on Thursday, July 05, 2012

I could not be more proud of you or more excited for our community!  After 13 years of friendship, I know how hard you will fight for someone - I'm SO glad IG Living has another amazing advocate!  

Valerie Riley
4:20 PM on Thursday, July 05, 2012

Thanks for sharing your experience and welcome.

Linda Thornrose
1:28 PM on Friday, July 06, 2012

From my heart as an 8 year PIDD patient, I thank you.  We need all the help we can get!

Betty
7:18 AM on Saturday, July 07, 2012

I too was a teacher for 28 yrs. I also had PIDD and was not diagnosed until years after forced early  retirement due to illness. A teacher is always teaching- those skills are needed -  and I am so happy you will be added to to the Advocates at IGLiving. Welcome.

Catherine Fitch Druitt
11:51 PM on Saturday, November 10, 2012

I too was a teacher, and managed to stay in a classroom longer than most with hypogammaglobulinaemia by using strong air filters in the closed classroom to kill germs in the air and keeping the hard articles wiped down with Clorox. My Mother lived with the clorox soaked rag in one hand, almost -- The  Library was off limits because people with germs  had touched the books;  obviously, the swimming pool was out of the question.  But she managed to make it to 73 with undiagnosed illness, and I am 80 this year, and it is all because my mother was so smart to see cause and effect with germs.  I had many shots of Gamma Globulin , luckily, because my husband worked in third world countries where hepatitis was to be avoided.  I now bless the replacement IVIG which has kept me going for so long, my mother who was so smart, and my sister, the doctor who got the diagnosis down pat.  I hope each of you with problems can have some rays of sunshiny good luck like mine!!  Catherine

Linda T
6:51 AM on Monday, November 12, 2012

Wow, Catherine!!  You are an amazing testimony of positive attitude and practicality!  An inspiration to us all.

KIM CONRAD
8:40 AM on Friday, December 07, 2012

CATHERINE
YOU INSPIRE ME WITH YOUR STORY AND LIFE. THANKS SO MUCH FOR SHARING HAPPY BELATED BIRTHDAY.
MY SON HAS CVID AND WELL/ ITS JUST HIM (MOM ) AND (DAD). TAG WE ARE IT.
NO EXTENDED FAMILY TO HELP OR THAT UNDERSTANDS WHAT WE GO THROUGH.
MY SON HAS BEEN SICK ALOT THIS YEAR , ON HIS THIRD WEEK NOW. THE DOCTORS ARE MAKING ME THINK IM CRAZY, EVEN HIS PULMONOLGIST AND IMMUNOLOGIST.  WISH I HAD SOMEONE WHOS BEEN THERE TO TALK TOO!
PRAY FOR US. FEELING ALONE AND ABANDONED

Linda Thornrose
12:44 PM on Sunday, December 09, 2012

Kim, I shall keep you and yours in my prayers.  I, too, have CVID and have been pretty sick this year.  I came down with a nasty bug on Thanksgiving and I am still feeling lousy and wheezing.  I took a round of antibiotics and two rounds of prednisone and though I am finally over the 'hump', I am not up to doing anything.  We have company coming this Tuesday for five days and I am so not ready.  Thank God my husband is retired recently and is doing what he can to help.  I also have my 83 yr old mother who suffers from dementia living with us for five years; she has gotten worse over the past year, so that can be hard sometimes (emotionally).  I know how frustrating it gets...I told my husband yesterday I was really feeling lousy after getting some housework and Christmas decorating done the day before and he said "what else is new".  He means nothing by it, but I know it gets old for him, too.  I just know I will feel better one day soon and this too shall pass...that is what is keeping me going right now.  I love Christmas and have not been able to participate in any of the usual activities this year.  Guess there is next year, huh?  Praying your son feels well soon so he can enjoy Christmas with his Mom & Dad.  Y'all are blessed to have each other.  God bless you and don't give up.

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