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Posted on 14. April 2011

Disease Envy

By Kelly Clardy

There are an estimated 1.5 million people in the U.S. with lupus. Thousands of walkers participate in nearly 70 cities across the nation to raise funds annually. In my state, there are more than 18 lupus support groups. A smaller number, 360,000 people in the U.S., are estimated to have brain tumors. In 2011, there will be at least 15 walks across the country benefiting brain tumor research, and in my city, there are at least three support groups. Very little needs to be said about breast cancer. We all instantly recognize their pink ribbons.

What do these illnesses have in common? People have heard of them. What is different about my primary immune deficiency disease (PIDD)? Most of the people I meet have never heard of it. So while the patients with breast cancer, lupus and brain tumors can drop the names of their diagnoses and their audience immediately “gets it,” I am in for a long explanation. Any discussion of my diagnosis and treatment is responded to with blank stares and glazed-over eyes. The best tool in my explanatory arsenal is the “boy in the bubble” story, and even that doesn’t always help.

Obviously, none of these other diseases are something you’d want; I certainly hope to never be diagnosed with one. And yet I have a big ’ol case of what I call “disease envy.” Let me explain.

I am green with envy for the recognition these diseases receive. From large fundraising walks across the country and local support group that are easily located online, to disease names that need no explanation, it all sounds pretty good to me. As a PIDD patient, I say “Sign me up!”

We know diseases like PIDD that are treated with intravenous immune globulin (IVIG) are rare. It’s no surprise that lack of awareness is an issue, even within our own community. At a recent infusion, I met another PIDD patient who had been receiving IVIG for more than two years. She heard me talking to my nurse about some of my advocacy efforts and immediately perked up her head. “Do you mind if I ask you what you two are discussing?” she asked. It turned out, she had never heard of IG Living magazine or the Immune Deficiency Foundation (IDF). She was certainly not aware of the many Facebook groups and Twitter accounts that revolve around IG topics. So instead of getting some much needed zzz’s during that day’s infusion, or catching up on my fashion magazine reading, I knew I had to take the time to tell her everything I knew. I wasn’t rested when I left the infusion center that day, but one more IG patient was a bit more enlightened about the resources that are available to her. I felt good about that.

Right or wrong, I admit I am jealous of the publicity other better-known diseases generate. It would be nice to be able to say, “I have PIDD” and watch people’s heads nod in recognition or even sympathy. I’m honestly not sure how we get that kind of recognition, but I suppose, ultimately, it’s up to us. Patients with rare diseases, especially those treated by IG, have to be our own advocates. We have to take the time to teach, explain and educate whenever possible —even if it’s just one patient, friend, co-worker, family member or physician at a time.

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Categories: Life With IG

Comments (7) -

B Kimberly Johnson
10:59 PM on Thursday, April 14, 2011

Dear Kelly,

Maybe you'll get lucky and have both!!  I have systemic lupus (which is flaring right now), secondary APS (antiphospholipid antibody syndrome, which does have a FB page from which everyone excitedly posted when it was on House and everyone diagnosed it before he did) and CVID.  I asked my rheumatologist how I could possibly have both--he responded, "Welcome to my world."  My limited research shows there are good and bad antibodies, and that's as far as my attention took me.  My epilepsy could be a component of my lupus--vascular or neurological?  both??  I am still tired and had a couple sinus infections since my ivig started about 7 months ago--my trough blood level wasn't too bad--will anything work?  But I have found the infections part of my life more impairing than the lupus . . . I think.  I did have a guy say, "You get sick all the time," when we broke up, and my husband is just sick of the whole thing.  There's the fatigue . . . sick??  lupus??  At least I know the painful bright wrinkly butterfly rash across my cheeks is lupus.

Actually, since the ivig community is smaller and tighter-knit, we have access to people like a patient advocate on FB!!  How lucky are we!!  And if someone else has pidd or cvid, there is a closer bond, since it is more rare.

I am not mad at you for your post!!  I agree!!  I just thought a person in my shoes was such an irony anyway, and a funny epilogue to your well-written article!!  : )

Keith
2:03 AM on Friday, April 15, 2011

I have a rare disease, disabling, and sometimes fatal too.  

I remind myself of the following joke when I get ticked-off by all the sympathy friends and relatives give the more common diseases:  How many cancer patients does it take to change a light bulb?  One, but they need hugs from 27 people afterwards.

Susan RI
5:28 AM on Friday, April 15, 2011

love this article, said so well

Michael
12:56 PM on Friday, April 15, 2011

Being graced with 5 auto-immune diseases and other medical problems, I agree wholeheartedly with the sentiments expressed in this article.  My disease envy revolves around the amount of time and money spent looking for cures of the well-known diseases vs. most of ours needing IVIG for symptom control.  

Tammie
3:02 PM on Friday, April 15, 2011

My mother passed away from a very rare disease. I can remember as a young teen being so frustrated when having to first repeat the name of the disease several times, but then follow up with a full clinic explanation. Followed quickly with a simplified explanation because they looked like a deer in headlights. I have often felt that until a celebrity lends their name to a certain disease, it just doesn't get the notoriety that the other diseases get. I agree with you completely that it really falls in our hands to inform and educate the masses, even if it is one person at a time.

Debra Griffin
9:19 PM on Tuesday, April 19, 2011

You know in reading this, it has really hit home.  I have explained this to everyone I know.  No one has heard of it & want to know when it will go away & how long will I have to do the treatment.  I have had rude remarks made as people pass by me wearing my sidekick surgical mask, when out in public.  Kids point & ask their parents, "Why is that lady wearing a mask?"  Most respond to them by grabbing them & rushing them away telling them how rude they were or just out of fear that I might infect them.  I've had a few mothers totally freak out & almost run with their poor kids while yelling at them.  I love it when the parent says, I'm not sure & the little one will look straight at me & ask why.  I tell them & the moms are really sweet to explain it to them.  One little girl last week said, "My bother wears one of those at work."  He is a nurse!!! For some reason most every little one smiles at me & waves or says hello!  I love that, my great niece calls me a kitty with my mask on!!  Those sweet ones make up for the ones who run because they don't know how to handle the situation.   Sometimes I want to wear a sign that says no I'm not contagious, but your sinus infection or bronchitis that you are running around with could do me in.   I know all who suffer from diseases feel this way.  I'm honestly ready to go to the newspaper & say would you like a new topic for your newspaper!!  Seriously I may!!

I have precancerous tissue that I've been dealing with & now my PAP was abnormal so I had a biopsy of the abnormal looking tissue.  

I changed Immunologist thanks to you guys!  The new Immunologist told me that the other Immunologist had me on a pediatric dose of Hizentra for 8 months.  Just made me feel sick, it's bad enough to have this disease, it's sad that not even Immunologist are not knowledgeable on this disease.  I have learned more from the PID Foundation & this magazine & chatting with people who have CVID, than from any doctor.  THANK YOU!!

None of my regular doctors know anything about CVID.  Today I was told by the OB/GYN office at a medical school that if I had a OB/GYN then why did I need an appointment.  I told her that my doctor had never heard of CVID.  She said, "Well I have never heard of it either."  I said, "Yes, but you have a Immunology Department that you can access who do know."  She said, "Yeah, I guess that is true."  The woman didn't want to make the appointment for me.    You feel so lost any way & most doctors just want to be rid of you.  Of course you do make their job much more difficult, they have to research & study more.  But being in a position where you just want a doctor who knows what they are doing just adds to the fear of learning that you have this incurable disease.  

The new Immunologist told me to stay away from little ones.  I told him that was difficult because I'm a Grandma.  He told me no kissing them & no hugging them.  And he told me not to kiss my husband.  I'm sorry how is all of this possible.  This has to be the most difficult part of this entire diagnosis to deal with.  I'm a very affectionate person, I've got a bad back so that is what Grandma did most, hug & kiss on my Grand-kids.  When I sit down I have 2 at a time on my lap!! When I'm in bed & the Grand kids come in they make a mad dash for the bed room & jump up & lay by grand ma & watch a movie!!  Grandpa is the one who does the active things with them.  Grandma loves on them, sings to them, teaches them.  One night a week we get them & I look so forward to that night.  Their mom has been in remission for 2 yrs. now with Stage 4 Bone Marrow cancer with secondary Hodgkins Lymphoma.  Now we have to tell them that Grandma can't hug & kiss them & they can't sit on my lap.  During her 7 months of chemo, I had the girls for a week at a time during her treatment week.  Or if they got a fever or sick we had to get them & would have them for days while sick. So we are so extremely close to them.  The reason they stay the night once a week is because it was normal for them to be here & they missed us.   Has anyone else been told not to kiss their spouse or their kids.  What if I were the mother of little ones.  What do you do.   The girls are more aware of staying away from people who are sick so they can come & spend the night with Grandma & Grandpa!!  When we are out, they spot people who are sick & will grab my had & say, no Grandma that person has a runny nose or they are coughing.  It is so sweet!  We wash our hands often.  Being at home most of the time gets so lonely, so I live to be with our girls.   If you have any suggestions please let me know

I'm trying to be positive, but negativity is coming at me from every direction.  I SHALL over come this fear & I will have knowledge, FIRST,  I MUST give myself time & HAVE patience!  I could do none of this without God, He is my strength & my source of peace!!!

All of this to say, with other diseases their are so many support groups that are there to answer those questions & be there for the family.  But so far I've only seen the PID Foundation & this magazine.  It adds to the fear & loneliness of having a disease that has so little funding for research!   Just educating the public of giving blood plasma so that others might live.  I don't know if the blood donor realizes what they do for us.

susan watkins
2:17 PM on Friday, April 22, 2011

Thank you for putting into words what I have been harboring in shame in my soul for so long.  It IS disease envy.  All you say is true, but I am liking some of the positive responses too.  We are a very elite group, and therefore we instantly become part of a family.  Some doctor's get it, not all, but some.  I too have other autoimmune diseases, IC, RA, Sjogrens all serious but alas, none as difficult, expensive and as misunderstood as CVID.  I try to tell myself I don't care anymore if I do not get the appropriate sympathy or understanding, but I still do, much of the time.  Here's a little secret though.. I don't think that most people really care what you have even if they don't recognize the name and the grandeur of it.  My family cares I know, but even they don't really get it at times.  If I look normal and have a few good days or a good week or two it's like, when the next symptom pops up they look at me like, oh God, we are so over this.  If I'm hospitalized or writhing on the floor, I can garner some sympathy, but only if there is time.

There is only one person in the whole world that will ever REALLY, REALLY care and work hard to understand, and that would be your mother... well at least my mother would have.  Unfortunately, she died before anyone could ever tell us why I was so sick much of my life.  But, it didn't matter to her if doctor's said I was crazy, attention seeking, malingering, or an antibiotic junkie, she knew that I was sick and that it was something big.  Here, Here, a toast to my mother and all of yours as well.  Cherish them while you have them.

One last word...  actually the one word that is used to describe many of us, mostly before diagnosis, 'sickly'.  I HATE THAT WORD.  It is demeaning, demoralizing, creepy, and unfair in so many ways.  In fact, I hate that word so much the next time someone refers to me in that way I might even punch them in the nose... gently though.  I don't need any of their bodily fluids making me sick.

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