 I'm Earl Manns. I am forty-seven years old and live in the western suburbs of Chicago with my wife and three daughters. I am an equities/sales trader and have worked in the brokerage business for the past 20+ years.
My oldest daughter, Mya, who is eight years old, was diagnosed with linear morphea a few weeks ago. My wife noticed smooth skin on her right hand and arm, and we had our family doctor look at it, as well as a spot on the back of her leg that looked like a scar, which we had thought it was some sort of birthmark.
 He was baffled and referred us to a dermatolgist and the diagnosis was made. We were told to put Dovonex on both Mya's right leg and arm and come back in six weeks, and meanwhile to do our own research. We did, and that is when we found this enlightening and fantastic website! Through this International Scleroderma Network website I was able to begin the education process. With the rarity and various subsets of these related conditions self-education is a must.
We determined that a juvenile specialist [either dermatologist or rheumatologist] was essential. We were referred to a juvenile dermatologist at Childrens Memorial but would have to wait weeks for an appointment. We were bummed!
After doing some additional reading via links on the website, and noticing that her skin involvement (which almost looks like a slight burn, hairless and smooth) seemed to be spreading, I called a nurse at Children's. I described Mya's condition and also noted that she seemed to be losing some mobility in her right hand.
We were told to come in that same day. Perhaps my almost blubbering (real men don't cry, do they?) on the phone helped the cause. Mya now puts Dovonex cream twice a day on the affected areas and at night we also wrap the areas in Saran wrap. She takes prednisone daily, methotrexate once a week,and folic acid six days a week. She also does exercises for her hand and arm (which are stiffening) for about fifteen minutes twice a day.
She does all this matter of factly, as part of her daily routine like brushing her teeth or combing her hair. Her leg and hand hurt at times, and she has occasional headaches as a side effect of the medication. I see her wincing at times as we go through her exercises. I ask, "Does it hurt?" and she says, "No, I'm fine, dad." She is a trooper — like so many people on this site are! I am proud to be her dad! Eight year old girls don't cry, but sometimes grown men do.
The sense of community on this site is a true blessing. I have spoken and exchanged emails with Shelley Ensz (thank you for your knowledge, thoughtful words and website!). I have communicated with a doctor in New Jersey who helped give me experts in the Chicago area, and exchanged emails with a mother of an eight-year old linear morphea patient in Ohio. We compared notes, and now our daughters are pen/email pals.
I talked to my wife and family and we decided we would do what we could to raise funds and awareness for ISN, to help fund research, support, education and awareness. I have run (actually, waddled) a few marathons and much like this site, running a marathon can be a spiritual thing.
I hope to have ISN run in all 50 states and internationally over the next few years. Join the sclero-excitement as a runner, waddler, corporate sponsor, or donor. Let me know your ideas! My email is earl-manns@sclero.org.
A marathon begins with one step. Be a part of this tremendous excitement as we run for scleroderma! |
