Lupus patient, 33, shares her suffering, hopes with Rotary Club
Her name is Barbi Manchester and she is 33. Five years ago her normal, active life received a “kick in the pants” and came to a screeching halt.
At a recent Thursday luncheon at Litchfield Country Club, she told the Rotary Club of Pawleys Island she was diagnosed with Systemic Lupus Erythematosus (SLE). She said the disease is still “kicking” because, until March 2011, there were no new FDA-approved drug treatments for Lupus in 52 years.
“Can you imagine the frustration for the doctors and patients because once you are diagnosed, it is trial and error,” Manchester said. “Unfortunately, for most Lupus patients, the treatment is as bad as or sometimes worse than the disease.”
The Mount Airy, N.C., native said she is one of the luckier ones. “My doctor recognized right away what she suspected to be Lupus and ordered the appropriate tests,” she said. “However, after positive test results on all the pathology and lab criteria required for an accurate diagnosis, I was told I had a life expectancy of seven years — which is not lucky. Still some people have it for 20 or more years and are just recently being diagnosed.”
Manchester told about her first 12 months of dealing with her “initial flare” with Lupus. “Then the battle began with adjusting to the medications, again a trial and error basis,” she said. “My symptoms started with a rash that literally peeled the skin off my hands. Then came the ‘butterfly’ rash that covered my face.”
“The achy body and a sense of extreme fatigue had started just weeks before the rashes. My joints, especially my hips, throbbed. In less than a week the hair loss started. Seizures, short-term memory loss and the blistering rash covering 90 per cent of my body followed in a matter of days. A biopsy confirmed the rash is Discoid Lupus.”
She said a recent bone densitometry scan revealed she is a borderline Osteopenia/Osteoporosis. “My bones are more like a 50-year old than a 33-year old,” she said. “I also have Fibromyalgia, IBS, Graves disease, Celiacs disease and most recently found 40 per cent hearing loss and I am wearing hearing aids. And this is “just the norm” for a Lupus patient.”
“To say a chronic disease such as Lupus is life altering is an understatement. It is life consuming — it has taken the life I once knew. I am now trying to find how to fit in ‘my new life’ and learn to respect each day. My mantra is ‘Pace Yourself, Pace Yourself.”
She said she was the first female football player for Mount Airy High School. “I have always been active, energetic and athletic,” she said. “I love the outdoors and have participated in sports since I was five years old — soccer, softball, track and swim team as well as high school football. My senior year I ranked 7th out of 400 high school place kickers. I won the Governor’s Award for Women in Sports in 1997 for my football participation.”
Life — even the smallest of things — has become a big thing, said Manchester. “I know how to fight for something that is important to me — something worth fighting for — and I don’t even mind the fight. I welcome the challenge; even more so since my son, Corbin, was born in 2009. If you could see Corbin you would understand when I say, ‘the fight is so worth it.’ Every day with that little boy is my gift. On my worst day, he makes it worth pushing on as I get out of bed and get us ready for the day.”
Manchester said she now fights to maintain a “decent quality of life.”
“I fight to get out of bed every day,” she said. “I fight to conquer the flight of 14 steps to my bedroom, knowing some nights I will sleep on the couch because I can’t make it to the top. I fight to stay up most of the day only taking short naps.”
She said she fights to keep the hair she has left by only washing it every three or four days and taking care of her scalp. “I fight to control my skin rashes by staying out of the sun and showering in cool water,” she said. “I ‘pat’ dry and don’t bathe in a tub of warm bubbly water.”
For Manchester, the cycle of a Lupus patient seems endless. “You have a symptom which is usually treated with drugs the FDA approved for another disease,” she said. “Before you become ‘normal’ — whatever that is — the cycle starts again and a new symptom arises and the cycle begins anew. However, the new symptom does not replace the previous one, just adds to it.”
A Lupus patient has extreme fatigue, restricting their activity, she said. “You must learn to pace yourself,” she said. “Otherwise, you will pay dearly for it and the next three or four days will be spent in bed with pain from your head to your toes. You may see me in the community and say, ‘But you don’t look sick’ You just don’t know how hard it was to get ready and how much preparation beforehand I must take into consideration before going outside my door.”
Manchester said National Register information was not consistently kept of Lupus diagnosis until recently.
“Therefore, the number of people suffering from Lupus was not accurately recorded,” she said. “It is now known via the National Registry that over two million people have been clinically diagnosed with some form of Lupus. Lack of funds and education has left the doctors with limited knowledge about testing, signs, symptoms and early diagnostic tools.”
Manchester said she can speak firsthand about the shortage of funds, research and diagnostic tools. “I was in a clinical trial at Duke Medical Hospital receiving an infusion treatment every four weeks,” she said.
“The drug was in the second B stage of FDA approval, but unfortunately didn’t meet the needed requirements and was terminated due to lack of funds. I was thrilled with my exceptional results in this trial and am devastated that I am back at square one.”
She said she “felt wonderful” and most of her medicine was eliminated. “I have been off all meds with the exception of a low-dose pain management drug for 60 days,” she said. “I have 30 more days before I am eligible to be placed in a new clinical trial.”
She said she is an activist for the National Lupus Foundation of America, www.lupus.org.
“I participated in Lupus Advocacy Day in Washington, DC, speaking to our Congress on the effects of life and requesting increased funding for research, education and support for the two million people suffering from Lupus. I need your help in this fight to maintain some degree of dignity, while managing the Lupus.”
Manchester said Lupus patients desperately need support — financially, mentally, physically and spiritually. “So grab your helmet, suit up and join me on the Lupus battlefield,” she concluded.
“Help me score the touchdown of a lifetime and find a cure for Lupus.”
By Lloyd Mackall
For The Times
Notice about comments: