» Lupus is more prevalent than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Lupus affects 1 out of every 185 Americans.
» It is estimated that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
» 90 percent of individuals diagnosed with the disease are women. Most people will develop lupus between the ages of 15-44, although lupus can strike men and women of all ages.
» Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.
» Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.
» Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
» Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.
Economic Impact
» A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643. (Imagine if you didn’t have insurance).
» The mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659.
» One in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
» One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
(Source: Lupus Foundation of America website 2011)
However, those who live with it have a constant reminder of the impact it can have both personally & professionally. In a survey conducted by LFA, survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus. But things are on the up & up in my opinion. Since signing up for Google Alerts for articles related to lupus, my inbox is filled on a daily basis with articles regarding the latest trials, medications, personal stories and new information regarding this condition and all that is being done to increase awareness & raise money to help find a cure. There is even a drastic difference in the amount of information I can find now as opposed to 2007 – it’s a step in the right direction but it is still not enough!
It seems lately autoimmune illnesses in general are all over the news! With these celebrities publicly sharing their experiences as well as this article (that made me adore Rob Thomas, lead singer of Matchbox 20, even more) – help to shine light on those individuals living with chronic illness as well as how it can affect their families & friendships. Even those who are in remission or live with a mild form of lupus still struggle to adjust to having a chronic illness & the impact that [even a mild form] can have on their lives.
Yesterday when I was in Madison visiting my friend Megan, we were driving & catching up when she asked me a simple question that seemed so difficult to answer… “So what exactly are your symptoms on a daily basis?” I struggled to find words because unfortunately each day is different – that’s why it’s so difficult for people to understand. I may go to bed feeling great and wake up feeling like complete and utter s#%* (excuse my language). There are days where it’s difficult to get out of bed or where making a simple phone call can seem like the biggest task. There are times where my body feels like it’s on fire & the only relief I can find is lying down and not moving. I struggle with extreme fatigue, numbness in my legs, arms, feet & hands, headaches, joint pain, insomnia, & muscle spasms to name a few.
As you can imagine, this could put a damper in one’s social life. That has been one of the biggest adjustments for me. I’ve been coming to terms with not being able to do as much as I used to. I still can go out but if I’m out late, I pay for it dearly the next day - but it’s my choice. Sometimes I want to forget and let loose but the more my body fails me, the more I realize it’s just not worth it. It makes me sad when I see & hear all the fun things my friends or family have done and I feel like I’m missing out. Don’t get me wrong, I still do some pretty amazing things but it’s just different now. I feel like I’ve lost a bit of my spunk & some of who I am. So whether or not I answered her question, I don’t know but trying to make people understand has definitely been a challenge, especially since I don’t look sick.
I do definitely take advantage of the days where I have energy and my pain & discomfort are manageable. My disposition isn’t always sunny but I try to make everyday as good as it can possibly be – which I think is true for most people. The thing that I try to remind myself is that it’s life – at any point it can change, for anyone at anytime – I’d much rather live it the best way I know how then just let it pass me by.
In looking back, I realize this post jumped all over the place but the thing I wanted to get across is just how important it is to increase awareness about lupus and to show you just how prevalent it is and the impact it can have on an individual’s life. If you made it here, thanks for reading!
Till next time…
1 comment:
Sounds Like me Life. I am with you!
Sandy
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