Lupus Foundation of America: Southeast Florida Chapter

08 Apr 2010 3 Comments

by michelinemaroni in Lupus Stuff Tags: Aud-Marie Ferstad Maroni, Broward County, Donations, Gaute Ferstad, Lupus, Lupus Foundation of America, Micheline Maroni, Mickey Maroni, Norway, Volunteer Staff

Please join me in the fight to bring awareness to, raise funds and find a cure for Lupus. WALK FOR LUPUS NOW will be held on May 15th in TY Park in Broward County: 3300 North Park Road, Hollywood, FL 33021.

I’ve been involved with the Lupus Foundation indirectly for several years by rasing money and participating each fall in the Lupus Walk at Eisenhower Park, NY. I’ve had the pleasure of always being accompanied by friends who’ve also donated financially. But this is my first go at being a true volunteer and becoming involved on a more serious level. 

Friends: Please email me micheline.maroni@gmail.com or contact me via FB to donate. $5, $10, $20 anything and everything is welcomed. My goal this year is to beat the last amount I raised which was approximately $350.

The public: If you are unable to walk and would still like to donate funds or would like to volunteer your time during the event, please contact: http://www.lupusfl.org/contact_us.html

This sometimes life-threatening disease affected the core of my family. At the young age of 52, my mother, Aud-Marie, lost her battle with Lupus. She was diagnosed in her early 40s. Doctors seemed to think that having me at age 39 initiated the disease somehow. 

I was spending summer vacation on Long Island, NY, with my father who still lives there today when we received the news that she’d died August 17, 1992. She was surrounded by the same hospital staff who she’d spent her last living year with. No family or friends were present. Oddly enough, it was the first time in over a decade that my father, brother and I were together in the same country, in the same house. It’s as though mamma waited for that to be the case before closing her eyes for the last time. And even though my parents were already divorced, my father, Mickey, was heart broken and still thinks of and misses mamma daily.

My 27-year-old brother, Gaute, traveled home shortly after the news to help his grandmother with arrangements. I was only 14 years old and had spent the last four years putting my dual citizenship to use after moving with mamma to her home country, Norway. I’d finally adjusted to life in Norway: the culture, the schools, the language, the people, the food. 

I found myself having to start life over. It was a double dilemma. As if being a teenager dealing with the loss of a mother in another country wasn’t bad enough, I hadn’t said good bye to friends, packed any of my personal belongings, nor was I able to attend her funeral. Freshman year of high school, Our Lady of Mercy Academy in Syosset, was only two weeks away. In the blink of an eye, I rearranged myself mentally, emotionally and culturally. I was back in America now.  

Systemic Lupus Erythematosus (SLE), is a chronic autoimmune disease often misdiagnosed as Rheumatoid Arthritis. It’s cause is still unknown although some evidence shows that genetic factors play a role. Some symptoms are a characteristic butterfly skin rash, arthritis, hair loss, fatigue, nephritis (kidney disease), swollen glands, joint stiffness, mouth ulcers, blood abnormalities, sensitivity to sunlight etc. In short, your body’s immune system is attacking it’s own cells and tissues.

As per http://www.lupusfl.org, “Computations based on population figures available March, 2002, show that 29,416 persons who have lupus reside in the seven counties served by the Southeast Florida Chapter of the Lupus Foundation of America – Palm Beach, Martin, St. Lucie, Okeechobee, Broward, Miami/Dade and Monroe. This total represents one-third of the total number of lupus cases in Florida. Miami/Dade, Broward and Palm Beach counties combined account for 27,066 lupus victims, around 30 percent of the state total.”

 

 Some quick Lupus facts:

• 90% of patients are women
• It is more prevalent among people of color (African-Americans, Hispanics, Asians, and Native Americans).An estimated 1.5 million Americans have Lupus.
• It normally starts between ages 15-44.
• 90% of patients survive for about 10 years after being diagnosed and can live full and active lives since treatment has improved over the past 30 years.
• 20% of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
• About 5% of the children born to individuals with lupus will develop the illness.

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