Click here for part one and here for part two of Sue’s Story!

When we left off Sue was battling hives (everywhere) and had received the diagnosis of Chronic Idiopathic Urticaria. Let’s get back to what she has to say about it:

It’s sooooooo NOT pretty.

The statistics for those with CIU look great, IF you are one of the ones who is responding to medications/allergy drugs/diets that take away the trigger, etc.

According to the most recent statistics released (M. Maurer et al. Allergy 2011:66:317-30; and Beltrani VS Coin Rev Allergy Immunol 2002;23:147-69) most patients have resolution over a number of years. Because my math is scandalously poor I had my husband( who is brilliant) help me transfer the information as if we had 100 people with CIU. Here’s what their work indicates:

Starting with 100 people, 50% of the people will resolve with or without treatment within 6 months. That means there are 50 people out of the 100 left. That’s awesome, right?!!!!

Then 20% of the 50 people left will resolve with or without treatment within the 3 years of onset. Now, out of that original 100, there are only 40 people left that still have those blasted hives after three years. By year 5 another 20% will resolve with or without treatment . We now have 32 people out of 100 that still have CIU.

However, 68 no longer have it! That’s worth celebrating! Here’s the hard part to take. By year 25, less than 2% more will resolve. I have had this 12 years and as of this December, I’m starting my 13th year. Ouch!!! So…about 31% of people with CIU may NEVER resolve.

That really freaks me out, AND CHALLENGES me to make a difference in the understanding of this disease!

Have you ever had poison oak, walked into a Nettles bush, poison ivy, had Shingles, or had a reaction from a drug that made you itch? How about being stung by a bee, or bit by some bug? Take whatever choice and multiply that itch by at least 100 times. I’ve had shingles, and a bad case. I’d rather have that for a shorter time period than feeling like I’ve been rolling in nettles all day, every day. Shingles were just horrifying, but they ended. These hives have not!

There are people who are buying Helminths (worm-like parasites) and introducing them into their bodies. The National Center for Biotechnology Information, US National Library of Medicine has some information on this. I am not ready to do this procedure (that would be never!) but there are people out there hoping this is their cure.

The World Health Organization is working to eradicate these same worms from the populace that people are putting into their bodies!

I believe this speaks to the desperation we feel as patients who have not found a way into remission from this disease!

Even though there may be future possibilities in this arena of parasitic worms that spread disease, and until a doctor prescribes it, I’m going to itch! I have a big fascination with slugs and snails (ugh), and a worm is fascinating also, but I won’t ever eat any of them.  Being an artist I might paint them, but allow the living specimen in my body…I get a bit queasy when I think of it.

Pretty much everyone will get hives in their life, usually due to an allergy, a medication, or specific food. If you know the trigger you can control the hives from occurring. Not so in my case. I have no known triggers and there are many like me. I carry epi pens (always two!) where ever I go!

Who gets Chronic Idiopathic Urticaria? Anybody! Is there are plan of attack for everybody, like I had with the incredible surgeon and support staff in getting me up and walking?

 No.

We are getting there, though! It’s slow. Very ssssslllloooowwww.  As doctors are educated about this disease and patients are educated about this disease, I believe things will get better regarding correct diagnosis.  There are large pharmaceutical companies working for us daily to find a way to help us live a life of quality.

Unfortunately, research is a long, long process and there are so many safety measures that control Pharmaceuticals (thank goodness!), that it may be a while before the next medication is released.

Unfortunately, so many people with this mast cell disease hide in the background due to the impact on their lives. They’ve given up.

This is not how I felt with the treatment after the car accident – the path was paved, and I followed it.  My hope is that by the time I can no longer advocate for those with Chronic Idiopathic Urticaria, there will be a myriad of roads to travel to help patients control and/or cure the deep hole that CIU creates in the lives of the people who live with this daily!!!

*Dr.’s Names are not their real names.  I don’t have their permission to use their names!

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