As you know, Planet Narcolepsy is always looking for contributions to the website. If you know anyone who might be interested in blogging for us, being a Twitterbug, or expanding our social media network on behalf of Narcolepsy Awareness and Education, please have him or her email us at admin@planetnarcolepsy.com.
Maybe your friends and family don't want to be involved with Narcolepsy. Maybe they have other conditions they worry about.
That's okay too! Planet Narcolepsy is pleased to announce that we have registered a second domain - AwarenessMatters.org Currently the page is under construction, and it will continue to be as long as it takes, but we'd like to roll it out soon, if we can get the manpower behind it.
Our slogan is "Awareness Matters." And it does, but not just for those of us with Narcolepsy. It's amazing how many other conditions, some closely linked to Narcolepsy, do not get the attention they deserve and leave people suffering, un- or mis- diagnosed for years, lonely and misunderstood, and often ridiculed for "invisible" diseases and disabilities.
Expanding on our theme of bringing together patients with supporters, medical professionals, and education, Awareness Matters will feature areas on medical conditions with similar stigmas to Narcolepsy. A few we've already considered are:
Inflammatory Bowel Diseases (Crohn's, Ulcerative Colitis, etc.)
Eosinophilic Conditions
Lupus
Fibromyalgia
Multiple Sclerosis
Many of these are autoimmune conditions, and the overall topic of autoimmune clusters is a goal to be addressed as well.
I need people to "man" these sections as moderators, bloggers, researchers, and marketers. I cannot do it alone! If you or someone you know is interested, please email admin@planetnarcolepsy.com for more information, and don't hesitate to share your ideas on content or other conditions to feature.
There are only a couple of "requirements" (I'm flexible) for any topic to be assigned its own section:
*The condition must be considered "rare" (rarediseases.org has an extensive but not all-inclusive list. If the topic is part of NORD's list, it is automatically accepted)
*There must not be any well-known, national groups or campaigns associated with the condition (NarNet is not well-known among non-narcoleptics, but the American Cancer Society is common knowledge to people who don't have cancer)
*There must be some sort of hurdle in obtaining diagnosis (a highly specialized test, a similar and often misdiagnosed condition (like epilepsy for us)
*There must be little or limited knowledge in the medical community at large
*Average time to diagnosis should exceed 2 years
*Funding for research must be minimal or nonexistent
I hope to hear from many of you and look forward to working together.
Showing posts with label rare disease. Show all posts
Showing posts with label rare disease. Show all posts
Monday, October 11, 2010
Friday, July 9, 2010
Narcolepsy was Enough
It appears I haven't written in about a month. I'd love to be able to say that's not like me, but the various notebooks and personal journals in boxes and bookcases around my house and in storage that all start and stop at random dates would beg to differ.
Part of me would also love to be able to say I can't think of anything to talk about, but that would be an outright lie. As a matter of fact, more often than not, I wake up in the dead of night, literally in mid-thought about some great piece or fantastic idea for a site section. Unfortunately, if I move to write it down, I forget it and my easily distracted brain turns on to more interesting and useless ruminations to keep me awake.
Lately, I've even been avoiding my computer in general. I'm just...pooped. For many months, I've slowly begun to feel that my medication wasn't working. Taking my Concerta at 6am when I take the dogs out and going back to sleep for a couple of hours used to make it easy to get up at 8 or 9 to start a day of research and supporting others and web design. But since March or so, 8 or 9 was creeping into 9:30, 10, 11...I haven't even bothered to take the Concerta at all in two weeks, since I sleep just as much on it as I do off of it.
It turns out, there is a sliver of good news - it's not the Narcolepsy. I don't have to be terrified at 26, after only 2 years since being diagnosed that this disease is suddenly speeding downhill at fullspeed and dragging me with it. I should still have plenty of time to work on a hundred more types of medication and dosages before I really get frustrated with that.
But, as always, there's another side to the exhaustion coin. Another side I fear many of us will have to face (those of us who don't already) at some point in the future no matter how hard we try to avoid it.
Another autoimmune disorder.
I have been diagnosed with several autoimmune disorders (and general "immune-related") disorders over the years, probably starting with allergies and asthma by the time I was six. I was also diagnosed with vitiligo, eczema, cardiomyopathy as a teenager, Narcolepsy (of course), and suffer from various symptoms of fibromyalgia, chronic fatigue, and certain other conditions that I do not actually fit the clinical guidelines for.
Recently, however, what started years ago as minor heartburn and nausea I thought was related to taking so many antibiotics as a young child and to being on so many prescriptions medications from such a young age turned into a constant abdominal pain that nothing would help. From there, it was intestinal pain, cramps, nausea, burning, from my throat to my groin. I could barely swallow my pills at night, and simple foods would take forever to swallow. Bananas were evil; swallowing a bite of potassium-laden goodness was like plugging a hole with expanding foam.
While reading about Autoimmune Disorders one day, I realized I had other symptoms that were probably related I hadn't even connected. Growing fatigue, tooth (as in ALL my teeth) pain and sensitivity, leg cramps, tingling and numbness in my fingers, palms, and feet, strange ear pains and pressure had all come and gone over the last few months, waxing and waning, and are apparently symptoms of various vitamin and mineral deficiencies. I was now convinced that my body wasn't even getting nutrition out of what little food it was managing to hold onto. Malnutrition even explained recent mood swings and weight gain. It was time to go back to the gastroenterologist.
Dr. C wasn't thrilled I'd skipped my follow-ups over the last year, but since we only thought I had some reflux and inflamation, no hard feelings. As we talked more, it was clear I needed a follow up endoscopy (a camera view of the esophagus, stomach, and very beginning of the small intestine), and because of the diarrhea and cramping, a colonoscopy. I can't say I was thrilled to be having the final frontier explored 25 years or so ahead of schedule, but I agreed, which should tell anyone who knows me how uncomfortable I had become.
The day before the procedure was the worst. I had to take two weeks' worth of laxative over a period of about 16 hours. Have you ever had the dry heaves? Imagine that, but at the other end. Strange, uncomfortable, and not all that different from what my body had been doing to me anyway.
They took tissue samples of my esophagus, stomach, small and large intestines, and colon and sent them to pathology to be tested and analyzed. I was certain that the samples and the bloodwork I had done would confirm one of three (or maybe three of three) possible diagnoses:
*Crohn's Disease - scary, bad, but not uncommon and manageable with medication, diet, and I know several people who have it, so I wouldn't be alone.
*Ulcerative Colitis - also scary, bad, not uncommon, manageable with medication, diet, and similar enough to Crohn's that I wouldn't be alone.
*Celiac Sprue - basically a gluten allergy, which includes wheat and other grains. This was specifically what I thought I had, and was the best "option" if I had a choice. No drugs needed, just diet changes, and I could be better than normal.
It didn't work out that way. I found out yesterday, July 8th, that all my bloodwork was essentially normal, and I am completely negative for wheat and gluten alergies, other food allergies, and have no infections or parasites. What I DO have is known as EOSINOPHILIC GASTROENTERITIS.
Eosinophils are the white blood cells associated with an allergic reaction. They are what flood the tissue around a bug bite and cause swelling. They don't hang out in the digestive tract. Actually, they do hang out in the digestive tract, of a very few people with EGID (eosinophilic gastrointestinal disorders) such as myself. They infiltrate the lining of one or more organs of the GI system and cause the body to react to food as though you are allergic to it, even when you actually aren't.
This means, without dragging out this post too much longer, that I have a super long road ahead of me with a condition that affects an incredibly low number of people. One article mentioned about 300 documented cases studied between the 1930's and 2009. The one support group someone found for me has about 600 members, with many of them family members of patients, and the patients you do hear about tend to be infants and children.
Although I am struggling to find ways to keep up my energy and mood right now, this is actually one more reason for me to devote myself to Planet Narcolepsy and my belief that "Awareness Matters." Because I don't think these conditions are exclusive, and I think the model we are trying to build with Planet Narcolepsy can be applied to so many other conditions and potentially change, maybe even SAVE, lives. Today, having the support of my friends, family, and members, it is mine.
Part of me would also love to be able to say I can't think of anything to talk about, but that would be an outright lie. As a matter of fact, more often than not, I wake up in the dead of night, literally in mid-thought about some great piece or fantastic idea for a site section. Unfortunately, if I move to write it down, I forget it and my easily distracted brain turns on to more interesting and useless ruminations to keep me awake.
Lately, I've even been avoiding my computer in general. I'm just...pooped. For many months, I've slowly begun to feel that my medication wasn't working. Taking my Concerta at 6am when I take the dogs out and going back to sleep for a couple of hours used to make it easy to get up at 8 or 9 to start a day of research and supporting others and web design. But since March or so, 8 or 9 was creeping into 9:30, 10, 11...I haven't even bothered to take the Concerta at all in two weeks, since I sleep just as much on it as I do off of it.
It turns out, there is a sliver of good news - it's not the Narcolepsy. I don't have to be terrified at 26, after only 2 years since being diagnosed that this disease is suddenly speeding downhill at fullspeed and dragging me with it. I should still have plenty of time to work on a hundred more types of medication and dosages before I really get frustrated with that.
But, as always, there's another side to the exhaustion coin. Another side I fear many of us will have to face (those of us who don't already) at some point in the future no matter how hard we try to avoid it.
Another autoimmune disorder.
I have been diagnosed with several autoimmune disorders (and general "immune-related") disorders over the years, probably starting with allergies and asthma by the time I was six. I was also diagnosed with vitiligo, eczema, cardiomyopathy as a teenager, Narcolepsy (of course), and suffer from various symptoms of fibromyalgia, chronic fatigue, and certain other conditions that I do not actually fit the clinical guidelines for.
Recently, however, what started years ago as minor heartburn and nausea I thought was related to taking so many antibiotics as a young child and to being on so many prescriptions medications from such a young age turned into a constant abdominal pain that nothing would help. From there, it was intestinal pain, cramps, nausea, burning, from my throat to my groin. I could barely swallow my pills at night, and simple foods would take forever to swallow. Bananas were evil; swallowing a bite of potassium-laden goodness was like plugging a hole with expanding foam.
While reading about Autoimmune Disorders one day, I realized I had other symptoms that were probably related I hadn't even connected. Growing fatigue, tooth (as in ALL my teeth) pain and sensitivity, leg cramps, tingling and numbness in my fingers, palms, and feet, strange ear pains and pressure had all come and gone over the last few months, waxing and waning, and are apparently symptoms of various vitamin and mineral deficiencies. I was now convinced that my body wasn't even getting nutrition out of what little food it was managing to hold onto. Malnutrition even explained recent mood swings and weight gain. It was time to go back to the gastroenterologist.
Dr. C wasn't thrilled I'd skipped my follow-ups over the last year, but since we only thought I had some reflux and inflamation, no hard feelings. As we talked more, it was clear I needed a follow up endoscopy (a camera view of the esophagus, stomach, and very beginning of the small intestine), and because of the diarrhea and cramping, a colonoscopy. I can't say I was thrilled to be having the final frontier explored 25 years or so ahead of schedule, but I agreed, which should tell anyone who knows me how uncomfortable I had become.
The day before the procedure was the worst. I had to take two weeks' worth of laxative over a period of about 16 hours. Have you ever had the dry heaves? Imagine that, but at the other end. Strange, uncomfortable, and not all that different from what my body had been doing to me anyway.
They took tissue samples of my esophagus, stomach, small and large intestines, and colon and sent them to pathology to be tested and analyzed. I was certain that the samples and the bloodwork I had done would confirm one of three (or maybe three of three) possible diagnoses:
*Crohn's Disease - scary, bad, but not uncommon and manageable with medication, diet, and I know several people who have it, so I wouldn't be alone.
*Ulcerative Colitis - also scary, bad, not uncommon, manageable with medication, diet, and similar enough to Crohn's that I wouldn't be alone.
*Celiac Sprue - basically a gluten allergy, which includes wheat and other grains. This was specifically what I thought I had, and was the best "option" if I had a choice. No drugs needed, just diet changes, and I could be better than normal.
It didn't work out that way. I found out yesterday, July 8th, that all my bloodwork was essentially normal, and I am completely negative for wheat and gluten alergies, other food allergies, and have no infections or parasites. What I DO have is known as EOSINOPHILIC GASTROENTERITIS.
Eosinophils are the white blood cells associated with an allergic reaction. They are what flood the tissue around a bug bite and cause swelling. They don't hang out in the digestive tract. Actually, they do hang out in the digestive tract, of a very few people with EGID (eosinophilic gastrointestinal disorders) such as myself. They infiltrate the lining of one or more organs of the GI system and cause the body to react to food as though you are allergic to it, even when you actually aren't.
This means, without dragging out this post too much longer, that I have a super long road ahead of me with a condition that affects an incredibly low number of people. One article mentioned about 300 documented cases studied between the 1930's and 2009. The one support group someone found for me has about 600 members, with many of them family members of patients, and the patients you do hear about tend to be infants and children.
Although I am struggling to find ways to keep up my energy and mood right now, this is actually one more reason for me to devote myself to Planet Narcolepsy and my belief that "Awareness Matters." Because I don't think these conditions are exclusive, and I think the model we are trying to build with Planet Narcolepsy can be applied to so many other conditions and potentially change, maybe even SAVE, lives. Today, having the support of my friends, family, and members, it is mine.
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