May Is Lupus Awareness Month – Help Me Spread The Word!

May has always been one of my favorite months.
Gorgeous flowers are in bloom, the temperature is creeping up, the days are getting longer and the air is sweet with the scent of lilac. Our family has always loved this month because it brings new beginnings, family celebrations and much fun!  On the first of May, Phil and I celebrate the anniversary of our first kiss. He never forgets it, always gives me a present and prefers it to our wedding anniversary.  I love it, too. Dylan rolls his eyes if he sees us hug or kiss.  He always says, “Sorry if I’m interrupting your romantic time!” This always makes us laugh.  On May 2nd, we celebrate, Dylan’s birthday.  The celebration usually goes on for at least a week…longer, if he has his way!  We start spending a lot of time outside in May and enjoy plenty of family BBQ’s.  I remember being a kid and loving the month of May because it meant summer vacation was just around the corner…long, lazy days ripe with possibility.

I still enjoy all of these special moments in May…but it has also taken on a more serious tone for me now.  The time I once spent daydreaming about catching fireflies and building sandcastles at the beach…I now spend brainstorming about how I can best spread the word about a dangerous, life threatening disease…Lupus.

May is Lupus Awareness month. While I try to educate people about Lupus every month, in May I feel a responsibility to do more.  I NEED to do more for the 5 million people worldwide who suffer from Lupus…often in silence.  Many people who have it won’t talk about it.  They don’t want to be judged.  They are afraid they will be treated differently. Take Toni Braxton for example.  She suffered with Lupus for years before finally revealing it.  She was concerned that the news would hurt her music career. Braxton said it was a difficult decision but she finally decided to talk about it in November of 2010…revealing that she suffers from the disease while at a Lupus fundraiser.  I remember hearing about the news and wondering what Lupus was.  Little did I know that just two months later I would be diagnosed.   I am grateful to Toni for having the courage to speak out about Lupus…even when many close to her told her to keep it a secret.

Here’s a clip of Toni accepting an award and talking about her battle with Lupus.

Video: Toni Braxton at the Lupus Bag Ladies Luncheon

After the event, Toni tweeted that revealing her struggle with the disease was “a big moment for me. It was a tough decision to come out about it. But it was such a relief!”

About a year ago, after I had gotten over the shock of my diagnosis, I decided that I would do anything I could to help bring awareness to this disease.  So, for those of you who are just learning about Lupus…here are 10 important facts from the Lupus Foundation of America…that help explain this mysterious auto-immune disease.

1: Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences.

2: Ninety percent of the people who develop lupus are female. Males also can develop lupus and their disease can be more severe in some organs.

3: Lupus develops most often between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve more rapidly into serious health complications.

4: In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that causes inflammation.

5: Some people have genes that allow them to develop lupus. Factors that may trigger lupus in these people include infections, ultraviolet light, extreme stress, certain prescription drugs, and certain hormones.

6: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Consequently, lupus can take three to five years or more to diagnose.

7: There is no single laboratory test that can determine whether a person has lupus. Diagnosing lupus involves analyzing the results of several lab tests, a review of the person’s entire medical history, and the history of close family members.

8: Lupus is treated by a rheumatologist, a physician who specializes in conditions affecting the joints and muscles. Some people with lupus may need additional care from specialists, like a dermatologist for skin problems, a nephrologist for kidney disease, or a cardiologist for heart complications.

9: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Medication and mind-body therapies can be used to help control the pain associated with lupus.

10: Lupus can be an expensive disease. The average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.

Please help me spread the word about Lupus.   My hope is…that one day soon… I’ll be able to write a blog about how a cure has finally been found.