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Posted on 31. October 2013

A Good Deed Never Goes Unrewarded

By Alyssa Rosengard

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A few months ago, I was sitting in an infusion chair, getting my dose of IVIG (intravenous immune globulin), when an oncologist approached a young woman next to me and was discussing the course of her treatment for idiopathic thrombocytopenic purpura (ITP), a genetic bleeding disorder. I felt my world slam into me as flashbacks of blood blisters in my mouth, not being able to use a toothbrush or razor, a dicey splenectomy surgery and experimental chemotherapy struck me like lightning. Ten years earlier, my road to being diagnosed with a primary immune disorder was rough. The bleeding disorder turned out to be a symptom of a larger, full-scale breakdown of my immune system known as common variable immune deficiency (CVID). What I most remember from that time was feeling completely out of control, confused and terrified. What was my body doing? Did my doctors really understand how to treat this rare illness? Although that time of uncontrolled bleeding is in the past, and I have come to understand how to take care of my disorder (through research, resilience and tenacity), I felt I needed to speak up to this lovely woman next to me and offer support. What can we do when we are faced with tough situations in life but to offer help to those who must unfortunately travel a similar path?

At first, I did not know what to say so I simply introduced myself. “Hi, my name is Alyssa. I didn’t mean to eavesdrop, but I have had the same disorder as you.” The young woman looked at me with stunned silence and then slowly began to tell me what was wrong with her and how she was being treated. She was confused. The oncologists had not explained how she became struck with such a rare disorder nor had they told her what was occurring in her body. She was in the dark and scared. I assured her that she could ask me anything she wanted, not to be afraid and let her know I had been in remission for the past 10 years. Tears welled up in her eyes as we talked. She asked me many intelligent questions that the doctors had neglected to tell her. Though tempted, I will not divert into a discussion of the responsibility of physicians and the failing of our healthcare system to treat us as people. She was relieved not only to know there was a positive outcome to this insanity but that she was not alone in her struggle. She asked me if she could hug me, even while connected to tubing and the IV pump. Of course, I agreed.

Caring for others helps alleviate pain, discomfort and depression. A primary immune disorder is isolating. I am confined to the house due to infection or risk of infection. I am an extrovert by nature and due to this illness have learned to live a more solitary existence. I have grown more self-centered due to some of the painful symptoms. I do make a concerted effort to step outside myself and ask how friends and family in my life are doing and offer a helping hand. It is not easy when faced with constant pain, nausea and general illness. It is one of the most important steps to take when dealing with chronic illness because we tend to go inside ourselves, retreat because our bodies feel out of control. When we take those brave steps outside ourselves to physically or emotionally help a friend, family member or complete stranger, our spirits are lighter. In Judaism, we call that a “mitzvah” or good deed. We remember we are a part of the human race. We raise our self-confidence and satisfaction in our own lives.

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Comments (1) -

Gail
12:37 PM on Friday, November 01, 2013

It is so wonderful that you reached out to someone with the same illness. The fact that she was able to discuss many things with you may have lessened her fear. I know that having the opportunity to talk to others who have CVID, as I do, has really helped me. Even though I have a tremendous immunologist who patiently answers all of my questions, talking to someone else with the same disease is the best, although I always keep in mind that not all with CVID may be in the same place as I am medically.

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IG Living Blog | Our Friends, Our Village
IMMUNE  GLOBULIN  COMMUNITY

IG Living Blog
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Dedicated to bringing comprehensive healthcare information, immune globulin information and community and reimbursement news.

Posted on 2. January 2014

Our Friends, Our Village

By Dona Darr

Recently, I wrote of true friendship and how it takes a village to help raise a child with chronic illness. This became so joyfully apparent a few weeks ago in my daughter's fifth-grade class.

Almost immediately after the start of the school year, my daughter starting getting sick. It was the normal stuff: colds, sinus infections and, I am pretty sure, every viral respiratory infection known to man that primary immunodeficiency disease brings to bear. Every two to three weeks, we were visiting the doctor’s office or the urgent care facility and even some emergency rooms. By October, I had lost count and started trying to think of ways to protect her yet keep her in school. I struggled with the idea of possibly sending her to school in a surgical mask.

I struggled in my own mind about how wearing a mask could affect her. We had educated her teacher and, through him, her classmates on some of the things she needed to do to avoid getting sick: disinfecting her area after changing classes and frequent use of hand washing and hand sanitizers. Her classmates had grown accustomed to those procedures and had accepted them. But, would they accept a mask?

I sat down and talked with her about my concerns and the idea of wearing a mask. She is only 10 years old, but I felt this was a decision she needed to be a part of since she would have to endure any teasing that might occur. So, we had a long talk and ultimately agreed it was time to try something new.

The school had been wonderful so far about accommodating her needs and helping come up with ideas for keeping her infections at a minimum. I called her principal and also texted her teacher to let them know the following Monday, I would be sending her to school wearing a mask and hoped they could help with any teasing that might occur. Her teacher texted me back and asked where he could get masks. I told him the pharmacy and wondered what he was up to. I had a suspicion that he was going to ask the class to wear the masks as well, but would the kids really want to do this for my daughter?

Monday came, and before we left the house for school, I ask her if she was ready. She assured me she was. She was a little nervous but was ready to tackle the day. Not long after I dropped her off at school, I received a text from her teacher asking a favor of me. He had left a bag from Walgreens in his car that had been left at the repair shop that morning and wondered if I would go and pick it up for him and bring it to class. My suspicions grew. I did as he asked, and when I delivered the bag to school, he told me he had purchased masks. So as not to influence the class, I delivered the bag and promptly left but requested he send me a picture of whatever resulted from his plan. 

Nothing could have prepared me for the text I would receive! Almost every child in my daughter’s fifth-grade class had chosen to wear the masks and support Emily in her battle to stay infection-free. The picture he sent was absolutely amazing! All I could do was sit there and stare at my phone and cry. The kids wore the masks all day with her. My daughter was so excited. She greeted me that afternoon with a smile on her face and told me all about how the kids wore the masks with her. There were even some kids who finished out the week with her. There were kids from other fifth-grade classes who were asking to wear the masks. I was completely amazed.

I posted the picture on my Facebook page and it went viral. It has now been seen all over the world, it was chosen as Facebook “Picture of the Day” on one of our local television stations and a story ran in our local newspaper. I am so proud to know these students. I am so proud to be a part of our community.

There have been many reports in the news of random acts of kindness. I cannot express what this act of kindness has meant to us. This was so much more than a financial gift or service. It was a gift of inclusion — a gift of acceptance and the willingness to assist in a simple, yet grand way to keep a child healthy. I think there is much to be learned from this fifth-grade teacher and his students.

These are our friends, and this is our village.

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Comments (2) -

Heather Claes
4:34 PM on Thursday, January 02, 2014

Wonderful! I am so glad to see a school work with a family and make everyone feel a part of the effo
rt to keep your child  healthy.

Linda Thornrose
7:58 AM on Monday, January 06, 2014

How wonderful!!  Thank you for sharing this story.  I only wish there was that much for adults who suffer with PIDD, but alas, we can't have everything, right?  Honestly, this story really touched my heart as I know children are not always compassionate.  It just shows, if these issues are communicated to them by good leadership (i.e. the teachers and principal), they want to be a participant in helping.  Great examples and lessons to grow these young people into kind, compassionate and responsible adults!  God bless all of you.

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