Truth
March 16, 2010
The average American woman is eight times more likely to have autoimmune disease than breast cancer (via)
We all know what a pink ribbon means. We recognize the celebrities that have come out in support of a cure for breast cancer, the inspiring crowds that turn up for breast cancer walks, and the charity events held to raise awareness and hope .
My wish is for a day in the close future that a color or the voice of a familiar face can evoke the same hope and support for autoimmune disease.
I started writing here with one goal on my mind: raise awareness for autoimmune disease. This is a story I’ve never shared before except with those very close to me but I feel compelled to write about it now in the spirit of spreading awareness during this month that has been dedicated to doing so.
I was diagnosed with Scleroderma / Mixed Connective Tissue Disease in Spring 2001 at 19 years old after many years of doctors visits with different symptoms. I was very confused and scared and I knew by the look on my mom’s face this wasn’t good. What she had learned was heartbreaking enough for a mother. The two words I noticed to be associated with Scleroderma in whatever I read about it at that point were “incurable” and “fatal“.
I shared the news with my family and close friends who shared my confusion and we did our best to make sense of it with the little knowledge we had and the little information available at the time . I turned to my then boyfriend and, looking for comfort, I told him what I had just learned. The very first thing he said to me was “What? I can’t catch this, can I?” My heart sunk down to my toes and broke to pieces. Needless to say, he wasn’t my boyfriend for much longer after that. But that one sentence changed me forever in an instant.
From that point on I kept it to myself. Anyone I would meet in college, all the boys I liked and went out with or wanted to get to know… I wouldn’t ever DREAM of trying to explain something like this to them. It felt like a secret I had to keep. How do you begin to explain something so complex to someone? I even had to explain it to nurses at the time because that’s how rare it was nine years ago. It would have been easier to just say “I have cancer” because then people just get it, nod their heads, and understand they cannot “catch it”. I put up a wall and promised I wouldn’t ever put myself in a position to feel that awful ever again so I rarely told anyone about my condition.
I lived my life and it was easy to pretend I was fine with limited bad days, a busy schedule, and I was on meds (methotrexate –which, in large doses is chemotherapy) that supposedly had me in remission. Little did I know that one day it would ravage my body and set sights on my heart, changing my life forever once again.
During that period and in the years since I have even gotten a handful of people that hear “autoimmune disease” and immediately stop listening –and I guess upon hearing the word “immune” they go “Oh, like AIDS?!” Well, NO it is nothing like HIV or AIDS. You cannot acquire an autoimmune disease through contact, or “catch it” that way either. You are born with a predisposition to it. It is in your DNA. It is your body’s failure to regulate one or many of it’s systems. In my case, it is overproduction of collagen (scar tissue) and a disease of the small blood vessels. My body cannot regulate it’s healing reactions and it goes into overdrive and attacks not only the germs but its own organs (i.e: the case with my heart).
I got many surprise reactions from many people when I was told my heart was failing in 2007. They had no idea where it came from. I always seemed fine, like nothing was wrong, and it even caught me by surprise. But I had kept my autoimmune disease a secret for so long that it was time to share my story and spread the word. If I can help even one woman or teenage girl avoid the confusion and unreasonable shame I felt then I feel I have done something good. No boyfriend should ever ask this question of their girl ever again.
In a world where autoimmune disease affects 1 in every 13 women it’s quite impossible to believe that 90% of people cannot name a single autoimmune disease.
Let’s please change this. The more we know, the more research gets done, the more of a chance we find cures and ways to manage this terrible diseases. Or even better, prevent them.
These days I have a man who loves me and my scarred heart to the end of time. He’s got my back in this quest to heal myself and change the game in autoimmune diseases awareness.
I would love your help in doing so as well.
Autoimmune Disease Summit
March 11, 2010
Here is the official webcast of the first autoimmune disease summit which was held on March 3, 2010. It was the kick off to this exciting month of awareness. The main theme? “The Global State of Autoimmunity Today”
From the press announcement:
“The summit will bring together researchers, patients, policy makers, and the media to bring a national focus to autoimmune diseases and to the 50 million Americans who currently live with an autoimmune disease. The program will feature a series of panel discussions and updates on public policy, media responsibility and public health issues, rise in autoimmune disease incidence, and future innovations in tracking, diagnosing, treating and curing autoimmune diseases.” (via)
It feels so good to see an effort to shift the focus onto autoimmune diseases. I cannot tell you how many people I’ve encountered (including nurses) that have looked at me with an expression of utter confustion when I try to explain my chronic illness. These illnesses are misunderstood and dangerously under the radar. I make every effort to spread a little more awareness each day.
Must Read
March 10, 2010
The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance – and the Cutting Edge Science that Promises Hope by Donna Jackson Nakazawa
I’ve mentioned this book many times before. It is a well-written, eye-opening look at how our bodies are desperately trying to keep up with our environment and what this has cost us. It also offers a hopeful message through ways of managing and hopefully ending this epidemic.
We have to be informed. Information is the best protection from this major health crisis.
If you or anyone you know suffers with autoimmune disease –even if you are a woman in good health, please consider checking this out.
“It takes the human body thousands of years to adapt to new environmental stresses -yet in a hundred years we’ve dumped so many toxic substances into our environment that our immune system is being asked to differentiate between our own body and unrecognizable invaders nonstop. Which makes our body much more likely to make a mistake than it was, say, a century ago. There are just so many more opportunities to make mistakes.”
-Ahmet Hoke, MD, PhD Director, Neuromuscular Division, Johns Hopkins Medical Institutions
List of Autoimmune Diseases
March 10, 2010
“…one in twelve Americans -and one in nine women -will develop an autoimmune disorder.”
- from The Autoimmune Epidemic by Donna Jackson Nakazawa
There are over 100 Autoimmune Diseases and counting. We also consider Autoimmune-related illnesses when we look at a list like this -meaning diseases that usually overlap or occur along with autoimmune disease. In honor of National Autoimmune Disease Awareness Month here is a list of the diseases to give you an idea of the epidemic we face in America right now. They are often hard to diagnose, there are no cures for them, and many times these diseases go undetected until a major health crisis erupts. Very often it can take years of connecting the dots (symptoms) to reach a diagnosis.
LIST OF AUTOIMMUNE AND AUTOIMMUNE-RELATED DISEASES
- Acute Disseminated Encephalomyelitis (ADEM)
- Acute necrotizing hemorrhagic leukoencephalitis
- Addison’s disease
- Agammaglobulinemia
- Allergic asthma
- Allergic rhinitis
- Alopecia areata
- Amyloidosis
- Ankylosing spondylitis
- Anti-GBM/Anti-TBM nephritis
- Antiphospholipid syndrome (APS)
- Autoimmune aplastic anemia
- Autoimmune dysautonomia
- Autoimmune hepatitis
- Autoimmune hyperlipidemia
- Autoimmune immunodeficiency
- Autoimmune inner ear disease (AIED)
- Autoimmune myocarditis
- Autoimmune pancreatitis
- Autoimmune retinopathy
- Autoimmune thrombocytopenic purpura (ATP)
- Autoimmune thyroid disease
- Axonal & neuronal neuropathies
- Balo disease
- Behcet’s disease
- Bullous pemphigoid
- Cardiomyopathy
- Castleman disease
- Celiac sprue
- Chagas disease
- Chronic fatigue syndrome
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Chronic recurrent multifocal ostomyelitis (CRMO)
- Churg-Strauss syndrome
- Cicatricial pemphigoid/benign mucosal pemphigoid
- Crohn’s disease
- Cogans syndrome
- Cold agglutinin disease
- Congenital heart block
- Coxsackie myocarditis
- CREST disease
- Essential mixed cryoglobulinemia
- Demyelinating neuropathies
- Dermatitis herpetiformis
- Dermatomyositis
- Devic’s disease (neuromyelitis optica)
- Discoid lupus
- Dressler’s syndrome
- Endometriosis
- Eosinophilic fasciitis
- Erythema nodosum
- Experimental allergic encephalomyelitis
- Evans syndrome
- Fibromyalgia**
- Fibrosing alveolitis
- Giant cell arteritis (temporal arteritis)
- Glomerulonephritis
- Goodpasture’s syndrome
- Graves’ disease
- Guillain-Barre syndrome
- Hashimoto’s encephalitis
- Hashimoto’s thyroiditis
- Hemolytic anemia
- Henoch-Schonlein purpura
- Herpes gestationis
- Hypogammaglobulinemia
- Idiopathic thrombocytopenic purpura (ITP)
- IgA nephropathy
- IgG4-related sclerosing disease
- Immunoregulatory lipoproteins
- Inclusion body myositis
- Insulin-dependent diabetes (type1)
- Interstitial cystitis
- Juvenile arthritis
- Juvenile diabetes
- Kawasaki syndrome
- Lambert-Eaton syndrome
- Leukocytoclastic vasculitis
- Lichen planus
- Lichen sclerosus
- Ligneous conjunctivitis
- Linear IgA disease (LAD)
- Lupus (SLE)
- Lyme disease, chronic
- Meniere’s disease
- Microscopic polyangiitis
- Mixed connective tissue disease (MCTD)
- Mooren’s ulcer
- Mucha-Habermann disease
- Multiple sclerosis
- Myasthenia gravis
- Myositis
- Narcolepsy
- Neuromyelitis optica (Devic’s)
- Neutropenia
- Ocular cicatricial pemphigoid
- Optic neuritis
- Palindromic rheumatism
- PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
- Paraneoplastic cerebellar degeneration
- Paroxysmal nocturnal hemoglobinuria (PNH)
- Parry Romberg syndrome
- Parsonnage-Turner syndrome
- Pars planitis (peripheral uveitis)
- Pemphigus
- Peripheral neuropathy
- Perivenous encephalomyelitis
- Pernicious anemia
- POEMS syndrome
- Polyarteritis nodosa
- Type I, II, & III autoimmune polyglandular syndromes
- Polymyalgia rheumatica
- Polymyositis
- Postmyocardial infarction syndrome
- Postpericardiotomy syndrome
- Progesterone dermatitis
- Primary biliary cirrhosis
- Primary sclerosing cholangitis
- Psoriasis
- Psoriatic arthritis
- Idiopathic pulmonary fibrosis
- Pyoderma gangrenosum
- Pure red cell aplasia
- Raynauds phenomenon
- Reflex sympathetic dystrophy
- Reiter’s syndrome
- Relapsing polychondritis
- Restless legs syndrome
- Retroperitoneal Fibrosis
- Rheumatic fever
- Rheumatoid arthritis
- Sarcoidosis
- Schmidt syndrome
- Scleritis
- Scleroderma
- Sjogren’s syndrome
- Sperm & testicular autoimmunity
- Stiff person syndrome
- Subacute bacterial endocarditis (SBE)
- Susac’s syndrome
- Sympathetic ophthalmia
- Takayasu’s arteritis
- Temporal arteritis/Giant cell arteritis
- Thrombocytopenic purpura (TTP)
- Tolosa-Hunt syndrome
- Transverse myelitis
- Ulcerative colitis
- Undifferentiated connective tissue disease (UCTD)
- Uveitis
- Vasculitis
- Vesiculobullous dermatosis
- Vitiligo
- Wegener’s granulomatosis
(list taken from the AARDA)
I highlighted the ones I am / have been diagnosed with.
Rheumatologist Waiting Room
March 9, 2010
Why are waiting rooms so depressing?I mean, a little effort can go into appearance. They are the worst places. I never understand why the windows are always covered up with thick discolored blinds or dusty curtains. They should open them and let in the natural light because these flourescent ones are just awful. Chances are if you’re in a waiting room you are sick or nervous or waiting for someone who is sick or nervous so why have they been designed like prisons?
AutoImmune Disease Awareness
March 9, 2010
March has been named National AutoImmune Disease Awareness Month!
This is so close to my heart since I am passionate about spreading awareness. It is the reason I started writing here. We have to raise awareness and educate people. The more we bring AutoImmune Disease into our national dialogue the more attention it will get –which means funding for research and eventually finding cures and/or prevention for these terrifying diseases.
“Today, fewer than 13% of Americans can name, unaided, an autoimmune diseases.This is staggering when one considers that there are 100+ known autoimmune diseases, all of which are chronic, many life threatening, and that as a category, autoimmune diseases are one of the top 10 killers of women under the age of 65. With the designation of March as ‘National Autoimmune Diseases Awareness Month,’ we begin to focus national attention on this issue, and it’s long overdue,” says Ladd.
According to the American Autoimmune Related Diseases Association (AARDA) here are some things we can do to spread awareness:
1. Be aware that autoimmune diseases target women; 75% of patients are women.
2. Know that autoimmune diseases tend to cluster in families. If your mother had rheumatoid arthritis and your sister had Crohn’s disease, you could be at higher risk than usual.
3. Autoimmune diseases are on the rise in the U.S. and around the world, celiac disease has tripled in the past 10 years in Minnesota alone.
4. Because of lack of early diagnosis and onset of treatment, healthcare costs for autoimmune diseases are overwhelming for patients and the healthcare system.
5. Everyone should know the facts about autoimmune disease.
Please spread the love. It can be so simple… you can feel free to share my story with one or two people that you know this month. There are so many like me who may not have a voice. So many (mostly women) who have been treated like hypochondriacs and often don’t find a diagnosis for their symptoms an average of three years after the onset of their health crisis. It NEEDS to be talked about. Let’s talk about it all month long.
Dysfunctional relationships
March 9, 2010
I have been attempting to order DVD copies of my latest test for one week now. I have called two offices to have them help me, left voicemails at the number I was given for the Echocardiogram desk at Columbia and NOTHING. It is a seemingly impossible fete!
You must go in person to actually sign for these copies which I am aware of and ready to do BUT I wouldn’t even know where to go at this point. I have been sent in circles. Why is this so hard? Why hasn’t anyone called me back?! What is the problem?!
I am in a dysfunctional relationship with the healthcare system… I give so much of myself with little to no reciprocation yet I still call and leave messages constantly.
I need these copies because I have a plan (soon to be discussed). I am tired of waiting around. I’m doing things my way.
How do you take a vacation from your body?
March 9, 2010
It’s one of those times in my life where I am feeling quite overwhelmed.
I have not stopped to reflect and truly put things into perspective since last week’s flurry to get my test results and all of the nonsense that comes along with something like this. Learning new information like my valves are “eccentric” (and therefore could not be helped by the Evalve trial) is staggering but I didn’t let it trip me up this time. I made a promise to myself a few months back that I will never get my hopes up about medical “things” until they are 100%, and I will take each piece of new information, absorb it, file it in my brain, but not allow it to harm me. I knew this time I wouldn’t let myself go backwards. You just gotta keep moving forward.
I process a lot of information when it comes to my health. It’s always on my mind, I’m constantly thinking and researching, and calling offices and insurance companies, etc. It is my full-time job (as I’ve said so many times before). I have been so busy just trying to manage my healthcare that I actually feel removed from it –as if I am calling for some other girl. Like I am watching a movie. I forget that I am actually working on ME and my heart!
The most daunting aspect of this insane ride is managing the doctors and their egos (and don’t even get me started on the hospital staff and secretaries that I’ve encountered). It’s actually nauseating how political you have to be with these dudes. Through experience I’ve learned (most times the hard way) how you should speak to this particular breed of human (doctors with tremendous egos) to get the most successful outcome. It is work, let me tell you. I want to compare it to being an assistant or PR person to some diva Hollywood star… you have to revere their feelings first and foremost, then figure out a plan from there. (I’ve noticed that Rheumatologists are especially sensitive, or “macho” as my pharmacist called one).
I have decided that I reached my limit today for this quarter. I am so sick of it. I stopped to think about what I was doing at one point and I am appalled at the fact that this is a GAME. Healthcare is a game, a joke, a system you have to work in order to make it work for you. If I wasn’t so exhausted I’d get into details but I think rehashing at this point will only get me agitated.
After tomorrow’s Rheumatologist appointment I need a break from associating with my doctors and calling hospitals searching for my test results.
I really need a break. Just a nice little sabatical. Sucks that you can’t take a vacation from being chronically ill with a fragile heart.
More to worry about
March 4, 2010
My throat hasn’t been back to normal since that awful test last week. I’m beginning to really get worried if there is something wrong. They informed me that there is a problem if I see any blood in my mouth when I cough. Haven’t seen any but sometimes I taste it. Gross, I know. I never know when to go in and check it out or just see how it goes? I get especially paranoid when I feel so weak like I do today. Ugh, I’m really stressed out. Mostly because I do NOT trust 90% of doctors and who knows what could’ve happened while they jammed that tube down my throat?
PS adding to my anger: the doctor that runs the Evalve trial still HAS NOT called me with my results. I hear through second and third hand accounts that I am not a candidate because my valves are “too messed up” and the clip would not help them. How is that for professional?
