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October is IC Awareness Month

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By Edited Jun 27, 2014 0 1

October is breast cancer awareness month and through pink ribbons everywhere we all remember that there is a need for awareness and a need for funds to be put toward research. However, there are other horrible conditions that people suffer from that don't get the publicity or the funds that breast cancer does. While breast cancer is definitely important so is IC (interstitial cystitis) and it shares its awareness month with breast cancer.

What the heck is Interstitial cystitis?

If you are like most people you don't even know how to say the words let alone what they mean. However, this is a horrible condition that more and more people are diagnosed with. This isn't because more and more people are getting IC (so much easier to say), but rather because most people who have it live in pain that their doctors tell them is nothing.

IC is a very painful bladder condition. In fact, it is so painful that it feels like razor blades or broken glass is in the bladder or pelvic region. It makes daily life difficult as one struggles with intense pain and normal daily functions including sleeping, sitting, work, and having a physical relationship. You may think that it isn't worth talking about. After all, there are lots of little unknown conditions around the world that we don't talk about and don't pour money into research. But IC is in need of research because an estimated 3 to 8 million women and 1 to 4 million men are suffering from it each and every day of their lives and those numbers are just here in the United States with millions elsewhere. That's 4,000,000 to 12,000,000 people in the United States alone!

No one talks about it!

Bladder conditions and pain are both something that most people who deal with are pretty discouraged to talk about. It's hard to share how you feel, what you deal with, and even every aspect of your life without sounding like a complainer. No one wants to be a complainer, but their pain and their life is very real. Without speaking out and sharing no one will know and there will never be funds to make a difference in research. Without more research millions of people will continue to suffer on a regular basis, because IC has no cure and very few effective treatment and management methods. For most it requires very expensive medications, dietary changes, and supplements in order to make things better, but that doesn't mean all the pain is gone or that issues don't continue to happen.

The First Step: Learn More.

I certainly can't get into everything, but there are some fast facts that will help you to know enough to understand the problems.

  • Millions have IC. Some go undiagnosed because their doctors tell them that there is nothing wrong, or worse that their pain and symptoms are merely things in their head.
  • Often getting to a diagnosis takes years of being persistent. This can be expensive as you go to doctor and specialist after doctor and specialist and pay for test after test in search of an answer.
  • Once diagnosed the problems don't just go away. There is no magic pill that makes it all better. Instead combinations of medications are tried to find out what will make things less painful than before. Most never have full relief of the pain and some find that the medications don't work at all.
  • These medications are very expensive. Many cost several dollars a pill and many people are supposed to take several pills a day. Many insurances don't cover these medications or only cover small portions of them.
  • Most people suffering from IC have to make dietary changes. This is often expensive and can be really hard (no chocolate, no citrus, and no tomatoes for most IC patients).
  • IC can and does cause disability. Many have to fight for social security in order to survive. You may wonder how a bladder condition could cause a disability and it is definitely a question I have heard before. However, there are several aspects that make life a lot harder if you have IC. There is the pain that can be very intense and make it hard to do more than lay there with a hot water bottle. Add to that the need to go to the bathroom a lot (often as many as 60 times a day). Then make it so that you have to go right now and it doesn't matter where you are or what you are doing. Accidents can and do happen, which is often embarrassing to say the least. If you are trying to work a job while dealing with pain, frequent bathroom breaks, and possible accidents it can be really hard to make it through the day.
  • In addition to IC being horrible, it often goes hand in hand with many other conditions including (but certainly not limited to) Irritable Bowel Syndrome (IBS), fibromyalgia, chronic fatigue syndrome (CFS), lupus, and more.

Next: Figure Out What You Can Do!

Knowing isn't really enough. After you know about something you need to be willing to do something. What is it you should do?

  1. Pay attention. Most of us don't listen unless we are forced to when others tell us about how they are. Pay attention if someone you know has IC or someone they know has it. It is important that we are there to support each other even if we don't really understand.
  2. Share what we know. The idea of an awareness month is to spread awareness of problems. Now is the time to share what you have learned with others. Let people know that the problem is out there and that we need to be concerned.
  3. Give a donation. Most people are very selective to what they give money to. However, there is a real need here and every dollar will help. Your donation doesn't have to be large to make a difference! Now is the time to give money to work towards a cure or at the very least better treatment and management options! To do so check out this site for information about IC networks though out the world. Make a donation for your country or for the nearest country to you.

If you would like to know more about what it is like to have IC then check out the blog, I C Therefore I Can.

With it being October it is important to get the word out there and to share what IC is all about and what we all need to do to make things easier for those that have IC and to help get to the point where better treatment, management, and hopefully a cure can be found. However, we don't really want it to stop there. We don't really want October to be the end of it. Sure that will give those of us who don't suffer from it a chance to learn and talk about it, but IC doesn't stop for those who have it after October. Because of that we should make sure that we keep sharing information, keep praying, and whenever we can sending money.

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Comments

Oct 24, 2010 10:24pm
aidenofthetower
I didn't either! Last year both my mom and my husband's sister-in-law were diagnosed with IC. I had never heard of it before that (they were diagnosed within a month of each other). Since them I have learned a lot and I know that it is really hard to live with and hard to talk about. It is a topic often shunned because of its nature, but more people really do need to know about it. It could be you, your mom, or your sister that is later diagnosed without much money going into research and looking for a cure. Plus it is really expensive to have, my husband's sister-in-law pays a ton in medications even with insurance and can't afford to get a second opinion on treating a secondary condition because the first said that there was nothing they could do and she would just have to live with the pain!
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