IMMUNE  GLOBULIN  COMMUNITY
skip to main content

IG Living Blog
share

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 25. February 2011

Because I Am His Mother

By Tammie Allegro

When I first came to work at FFF Enterprises, the company that publishes IG Living magazine, I knew nothing about intravenous immune globulin (IVIG). I couldn’t name a single primary immune or autoimmune disease. But, once I got settled and started to learn about the IG community, I was dumbstruck by the number of diseases that I had never heard of. I began reading IG Living all the time, taking home issue after issue to learn as much as I could.

It wasn’t long before I learned a tremendous amount about IVIG, illness statistics and disease states. Then, I met Tyler and his mother Raschelle, and quickly realized how little I knew. Statistics are one thing, but when you put a face on a disease, it adds a whole new dimension.  The education I have received from my friendship with this family is priceless.

As the mother of a child who has primary immunodeficiency disease (PIDD), Raynauds phenomenon, eosinophilic esophagitis (EE) and steroid-resistant asthma, Raschelle is a warrior - she has to be. In the 17 years that her son has been on this planet, he has had so many surgeries and hospitalizations that you almost lose count. She hasn’t lost count. With obscene detail, she can recount the many trips to the emergency room, as well as the countless doctor visits and close calls. She can also recount for you the millions of times that she has answered the question, “Is he really that sick?”

When your child has an illness like PIDD, there is nothing obvious for the world to see. And, those of you with chronically ill children know that this presents many challenges when trying to care for and nurture your child.

Raschelle can recall with great clarity the first time Tyler stopped breathing, his first trip to the emergency room and his first IVIG treatment. The amount of detail stored in her brain is amazing. She speaks like a doctor with 20 years of experience practicing medicine.

According to Raschelle, when your child gets really ill, you quickly find out what you are made of. First you fight for appointments and tests, then you fight for diagnosis and treatment. Socially, life is a fight as well; you have to fight for your child’s right to be safe and healthy by keeping them away from other children who might be sick. Raschelle has constantly fought with a system that was created to keep kids in school and, therefore, loses sight of those who are chronically ill and may need to live by different rules. She also has fought with insurance companies over claim processing and denials. In a sense, Raschelle is fighting with the world to get them to understand that her son is really sick.

Spending your whole life fighting might cause some people to become angry and bitter, but not Raschelle. She is simply resolved to stay focused on what matters most. When asked why she never backs off or gets discouraged, her answer is simple: “Because I am his mother.”

What about you? Share some of your fiercest mothering moments, and offer some tips to parents who are just starting on this journey.

  more

Comments (2) -

Amy
11:41 AM on Saturday, February 26, 2011

I have many fierce mothering moments!  My children, thankfully, are quite healthy.  I am the one with PIDD, and a plethora of other health issues.  I was widowed when my children were 1 and 2.  I chose to raise my children in a small town, which I discovered had definite "down-side" when they entered/attended grade school.  

In a town with less than 5,000 people, it didn't take long for people to discover I was "different."  For example, the time my son told his first grade teacher that I would be late picking him up that day because "mommy is getting the needle in her arm again."  Boy, did rumors start to fly!  I would find out that other mothers were concerned about letting their children come to our house to play.  I would hear people whispering that I had hepatitis or HIV.  At one point I was questioned by the school whether my children posed any health threat to the other children.  I had many fierce "mommy moments."  Thankfully, my children, for the most part, were oblivious to the rumor mill.  I gave a number of people quite an education about PIDD in those years.

To other parents, DON'T BACK DOWN....EVER.  Educate yourselves as much as possible about your or your child's diagnosis.  Feel free to educate anyone who wants to know more, or those who NEED to know more.  Raising awareness about PIDD and other immunological diseases is important. From my own experience, I have found that educating others about this made things much easier on myself, and my children.  Never fear the truth.  

Betty
12:15 PM on Sunday, March 06, 2011

I am a little  late seeing this blog- but I think my Mom was the fiercest person I knew in trying to get MD's  to see there was something wrong with me.

It started for me at  age 4 with a sudden dose of double pneumonia ;  the best a local RI pediatrician could tell her  was I had something missing in my  system but he did not know what.Treatment was an immediate shot of pneumonia and bed rest and many egg cabinets. (frappes)

Followed many scenes with my mother begging or demanding Md's figure out why  I was always sick. No one did- despite all the signs we now see as so evident- frequent infections; muscles problems;stomach issues;  cancer etc.
Sinus surgery and 13 other surgeries over the years.

Up to age 4 i was a healthy little chubby baby raised on backyard pruduce and rabbits and chickens.
After I was sick the smell of food would make me sick.

At age 57 when finally diagnosed I went to see a Boston  immunologist who asked me 4 times during the conversation- "Did no doctor in RI  tell you to come to Boston when you were a child? ' The answer was no. He seemed incredulous.

After all I live 50 minutes away and the pioneer  research MD for this disease Dr Rosen was giving gamma shots to children  in the 1950's when i first came down with double pneumnia.

My only regeret is my Mom passed at 93 in April 2003 and in December I was tested and Jan 2004 told I had IGG#3 deficiency. Feb 2004 I started IVIG.
Wish she could have heard that she was always right- there was a reason I was always ill.Wish she could know I can now eat foods I never touched for years.

Betty

Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com

s
IG Living Blog | The Psychological Implications of "Everything, Everything"
IMMUNE  GLOBULIN  COMMUNITY
skip to main content

IG Living Blog
share

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 5. October 2017

The Psychological Implications of "Everything, Everything"

By Jodi Taub, LCSW

The movie "Everything, Everything" is the portrayal of a girl, supposedly diagnosed with a severe combined immunodeficiency (SCID), who is trapped in her home at the recommendation of her mother and physicians because she is "allergic" to the outside world. Many patients, caregivers and advocates in the primary immunodeficiency (PI) community have strongly reacted to the misrepresentation of this disease. As a therapist with a PI, I wanted to talk about why this teen drama holds so much weight.

Shortly after being diagnosed with a PI in 2006, I, like many of the patients diagnosed with PI, had never met anyone like myself. While searching to connect to a patient community for peer support, medical information and connection, I became involved with the Immune Deficiency Foundation (IDF). Since 2007, I have been volunteering for IDF as a therapist helping children, adults and their families to cope with the emotional issues that come with managing a rare chronic illness.

Despite the fact that there are more than 300 different forms of PIs, affecting approximately 250,000 people in the US,1 PI is less known than many other disease states. In fact, the only public representation is David Vetter, known as the "Boy in the Bubble," who lived in a self-contained environment until his untimely death at the age of 12 from a failed bone marrow transplant.

In 2017, David Vetter still exists as our only public face of PI. The problem with this sole representation is that he lived in a limited world and then passed away. Because of the tireless efforts of advocates and their physicians to ensure better research and treatment, life with SCID is no longer a death sentence. There are many children and now adults who are living relatively normal lives with SCID and with other forms of PI. However, this is not the public perception. Imagine what a parent must feel like when they learn their child has "Boy in the Bubble Disease" and that’s all they know?

All of the 250,000 Americans with PI still have to cope with the lack of public awareness. The average age of diagnosis from onset of symptoms to diagnosis is currently 15.3 years (IDF latest statistics). This means that many patients and caregivers live with serious infections and debilitating physical symptoms for years without a clear diagnosis or treatment. Not being able to identify the source of your illness is not only stressful from a physical standpoint but from an emotional one as well. As a result, patients and family members miss out on the much-needed empathy from friends, peers, family members and co-workers.

The most hurtful of such complaints include but are not limited to comments such as, "You don’t look sick, maybe you have AIDS?" and false accusations of Munchausen by proxy. As I wrote in the "Life Management Section" of the IDF Patient and Family Handbook, 5th edition,2 "Although not ill-intended, people often do not understand how their comments, minimization of the illness or lack of understanding can really undermine your sense of self worth and leave you feeling misunderstood or alone."

It is difficult enough having to cope with the physical manifestations of a rare chronic illness, but having to constantly explain, defend and justify your illness only creates further shame, resentment and fear. The No. 1 complaint that I have heard from patients over the years is that they wish that other people understood. I know this to be true not just professionally, but from a personal perspective. I am a therapist with a treasure trove of coping skills, support and resources, and the misunderstanding around my illness is still difficult to take, even 11 years after being diagnosed.

There are several ways that "Everything, Everything" has dangerous implications and can be traumatic for our community. For patients or caretakers accused of Munchausen by proxy, they again face peers, friends or families who, after seeing this movie, may reinforce some of these themes. No patients, caretakers or parents deserve to relive this false and painful fallacy. We are asked again to defend our illness, creating further shame and resentment.

Another concern about this movie is the portrayal of adolescent love and the targeted audience. For the parents of children who have PI, many struggle with allowing their kids to have normal teenage experiences while not risking their health. In this movie, the main character makes the choice to risk her health for quality of life. This sends the message that life with PI is not worth living. Recent studies have shown that patients with PI have a greater risk of anxiety and depression. For example, Anxiety and Depression in Adults with Primary Immunodeficiency (PID’s) - How Much Do These Patients Experience and What Factors May Increase Patients’ Risk?3 sends a message to a group of at-risk teens that is both disconcerting and irresponsible.

If this movie character, Maddy Whittier (played by Amandla Stenberg), was one of many public faces of PI, the misrepresentation of a SCID would not be so consequential. However, because this is the first movie character since "The Boy in the Plastic Bubble," it carries a much greater burden. What the PI community deserves is an opportunity to show what life with PI really is. The importance of, "Everything, Everything" is that it calls for an accurate public face of PI. With diagnosis, care and appropriate medical treatments, we can live full lives with PI. With proper public perception, we don’t have to live in the "Bubble" anymore.



References

  1. National Institutes of Health. Primary Immune Deficiency Diseases (PIDDs). Accessed at www.niaid.nih.gov/diseases-conditions/primary-immune-deficiency-diseases-pidds.
  2. Immune Deficiency Foundation. Patient and Family Handbook for Primary Immunodeficiency Diseases. Accessed at primaryimmune.org/wp-content/uploads/2016/03/IDF-Patient-Family-Handbook-5th-Edition-2015-Reprint-Chapters-32.pdf.
  3. Heath, JL. et al. Anxiety and Depression in Adults with Primary Immunodeficiency (PID's) — How Much Do These Patients Experience and What Factors May Increase Patients' Risk? Journal of Allergy and Clinical Immunology, Volume 137 , Issue 2, AB256. Available at www.jacionline.org/article/S0091-6749(15)02665-2/abstract.
  more

Comments (1) -

Tiffany
11:28 AM on Friday, October 06, 2017

This is a great write-up of my feelings exactly! Thank you for this article!

Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com

s