One Patient's Positive Perspectives

Lupus Awareness Blog No. 16 – Molly’s Fund Fighting Lupus & Molly’s Blog

On the capitol steps680x260

Oregon recognizes May
as Lupus Awareness Month!

Today, we turn the spotlight onto Portland, Oregon and Molly’s Fund and Molly’s Blog.  Molly was in her twenties and just beginning a promising career as an opera singer.  She suddenly became ill with multiple infections and overwhelming multi-system health problems that severely interrupted her ability to perform as a singer.  After a very rough year and several doctors, she saw a rheumatologist who diagnosed her lupus.  After her diagnosis, Molly and her mother co-founded the beginning of Molly’s Fund.

Molly’s Fund Fighting Lupus is a noteworthy regional non-profit foundation in the Northwest United States that seeks “to educate the public about lupus, partner with the medical community to push for earlier, life-saving diagnosis, and to spur governments and foundations to fund research toward a cure.”   They sponsor annual lupus awareness campaigns in Oregon, Washington and Idaho, and give 90% of the funds they raise to outreach and support programs.

Annual lupus awareness events Butterflies In the Park and Serving Up Style and other events and programs draw attendance of over 20,000 people in the Portland area each year, while raising funds to support earlier diagnosis, patient support and advocacy, and a client assistance program.   They sponsor support groups in the Pacific Northwest area of the United States and offer weekly online support groups — one for patients and one for family, friends and caregivers of lupus patients.

Molly

Molly’s blog @ www.mollysfund.org/blog/

“As I am able, I will share with you my personal journey and challenges with lupus.  I know first hand how difficult dealing with lupus can be, and the unique struggles you may be facing.  My blog is about sharing and I will do my best to give you  insights, hope and support.”

Lupus Truth No. 16 – the most common type of lupus is discoid

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for about 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.

My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, ears, hairline, scalp, chest, arms and thighs.

Now, occasionally a few discoid rashes develop between my fingers, on my forehead or cheek, neck or my hairline.  They are treated with topical prescription steroid creams, and heavier application with cotton gloves at night.

Scaly Rash, Steroids and Softening Sugar Scrub

A recent discoid lupus rash outbreak on my hands has been especially hard to get under control and kept spreading to larger areas of my hands over about a two month time.  The intensely itching and burning rash circled my fingers and was crusted and flaking constantly, so the dry thickened surface was making it hard to get steroid cream to the active layer of the rash underneath.

Every time I washed my hands or got them wet in the kitchen I was wincing, and the skin was beginning to get extremely fragile and crack open multiple places and bleed.  I was bleeding onto things I touched all day long, no matter how much hand lotion and steroids I applied.  I was slathering on the prescription steroid cream, but it didn’t seem to get through the surface of the dry itching rash and was doing very little good.

baby and butterfly hand

Longing for
baby-soft hands

In desperation, decided to try gently rubbing a hand manicure sugar scrub sample I received at the beauty supply store on Mother’s Day weekend over the rash to remove the dead skin from the surface of the rash.

It was unexpectedly soothing, and gently softened and removed the dead, dry cracked surface of the exposed rash – allowing me to apply the steroid cream directly to the fresh soft surface of the rash underneath, without dead skin layers in between.  The sugar scrub did not irritate or make the rash more raw, and had a surprisingly immediate healing effect.

Now, the steroids I am using on the rash are more effective and my rash has quieted down.  Within one day of using the sugar scrub, it was much improved and stopped intensely itching.  The aggravating pain and raw, cracking rashes on my hands, quickly began healing and reducing.

I repeated light application of the sugar scrub the next day to remove the overnight buildup on the rash surface, and this again helped me get a more effective application of the steroids to the rash.

It has now been 3 days since I first used the sugar scrub before applying steroids, and I can hardly believe how much the rash on my hands has healed.  It no longer hurts or itches, and has stopped spreading.  The only crusted areas are the spots that had involved deeper layers of my skin, but even those are finally healing and improving.

To learn more about this lupus fact, please read my post from  May 16, 2012.

Tomorrow it is finally time to POP — Put on Purple — for Lupus May 17th!

Remember to don your head-to-foot purple colors to “POP” — Put on Purple — for Lupus tomorrow, Friday, May 17th!

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