Dear Sweet Richard,

I am sitting here crying my heart out because I feel like you just reached thru the t.v. screen at me and said " Beth please write me, I will make your dream come true". Please get some kleenex and take my hand and feel the love in my heart as I write this letter to you.

My dream is not for myself it is for my friends who suffer and die in silence with this little known about disease we share called Lupus. More people have Lupus than Aids, MS, MD, Leukemia and a host of other diseases COMBINED but because it is primarily a woman's disease attacking young women in their child bearing years we have little funding for research and almost no public attention. Alot of the awareness and attention that we do get, is done by us the victims of this cruel disease.

A handful of us have been writing letters to newspapers, churches, quilting groups and others asking for quilt squares to be made so we can make lupus quilts, similar to the Aids quilts, to tour the country to promote and support lupus awareness. I had the honor of showing 2 of the 8 quilts we so far have made this past Feb. in our local quilt show. Each square represents someone who has now or has passed from lupus. To touch to see these names and pictures sewn together is emotionally overwhelming. People who had no idea what Lupus is would stand and cry like babies looking at them. A handful of my lupus friends drove or flew in and helped me hand out thousands of brochures and information. We met over 80 people who knew someone personally with this terribly cruel disease. I will attach the newspaper article about me and the quilt show at the end of my letter.

Now to my Dream request......Richard would you show our labor of love quilts on your show and allow the 2 ladies you make them spend a few minutes explaining our disease and what these quilts mean to us? I have been dreaming of this to happen for years and this would be a true DREAM COME TRUE for me and any others. That's my dream request.

We are suffering so horribly in silence. We are dying, becoming disabled and bedridden, commiting suicide, losing our spouses, houses, jobs, going without food to buy our astronomical priced prescriptions. The steroids we all take are blowing us up to 200, 300 lb. women, teens and a few men into people with little hope left. We are called crazy and lazy because it takes years for a diagnosis. In the meantime we become emotionally and physically withdrawn from our families. Many of us like myself and have no insurance and have thousands and thousands of dollars worth of liens on our homes. We are having strokes, heartattacks and other major organ involvement in our 20's and 30's but our government just doesn't seem to care nor want to give us mone for research.

I am bedridden and one of my sons bought me this webtv with wireless keyboard so I could reach out to others like myself and try to help any way I can. I host a chat room, a forum, I send out a newsletter and spend atleast 15 hrs. each and everyday on line or on the phone supporting, comforting and wiping away tears. I have no money but I have a very supportive husband who works 60 plus hrs. each week to try and keep up with my bills and if there is any left he will let me send flowers to a friend who is in the hospital or in need of love and a smile. We live at the beach in S.C. in a run down 20 yr. old trailor with 3 of our children. Each time a hurricane comes I get paralyzed with fear that our home won't make it and we have no insurance. I pack my children's photos and things we can carry and go hide in a shelter. I know and accepted the fact that because of my disease I will never have a real home so I pray as hard as I can for God not to put anymore on my shoulders, I don't even have a car. I became so sick so fast one of my son's tried to commit suicide and then turned his anger on me and hurt me very bad. The state sent him away for a year but sadly he is still angry at me because I'm just a shell of his mom.

As you can see I have alot of important things that I could dream for but getting the word out about this disease is the most important to me........because it will help so many people if you do.

  These two diseases, Lupus and Fibromyalgia, are very similar and both kill. I have had these diseases for many years now and I can tell you first hand how desperately we need public awareness. I personally would have never known that I had Lupus if I had not seen a Public Service Announcement on TV one night. For years I had been complaining to my physician about different symptoms I was having and finally he suggested that I go see a psychiatrist because NOBODY could feel as bad as I do. When the PSA came on tv, which by the way I feel was a sign from God because that was the first and last time I saw that commercial, my husband and I looked at each other and our mouths fell open.

Eighty percent of people with Lupus are African Americans. It effects mostly women in their child bearing years and robs us of our lives. We Lupus sufferers are currently working on two very important projects . The first is HR1111, the Lupus Bill, for Federal funding. We are writing letters to our Representatives to support this bill. It saddens my heart to inform you that my Representative, Mark Sanford, has chosen not to support this bill. Secondly we are making quilts, similar to the Aids quilts, to tour the country and Support and Promote Lupus Awareness. When you look at the quilts please keep in mind that on each square is a name of someone who is suffering so needlessly or who has passed. It is because there is no public awareness about our plight that we suffer in silence.

    The maker of our quilts is Chelsea Arnett and she is the very special lady who saw that we had a need to have our diseases heard about.   She with the help of 2 very special friends Glen and Peg have worked very hard to help us, the sufferers of these diseases, get much needed attention for a cause and a cure. These quilts are truely the most unselfish act of compassion and love that I have ever heard of. This is the first of the many Auto Immune disease quilts that are traveling the world. They were made with alot of love and compassion. Chelsea has devoted her time and talent to us with Lupus. When her daughter was diagnosed with Lupus she wanted to do something to help raise awareness so she came up with the idea of quilts just like the AID's quilts. Each sqaure stands for a person. It has their name on it, diagnosis date alot of times and sometimes something special they wanted to add. Most of the squares on the quilts are donated by quilters groups, orginizations, and people along the way that quilt and found it in their hearts to help us out. Peg is now working on the Lupus Memorial quilts, they are for all the angels that have been lost to this terrible disease.

  Just because my body is broken doesn't mean my mind is and for whatever time I have left on this earth I will spend every single day doing as much as I possibly can to promote public awareness for not only us, women, men and children who are suffering now but for our children, grandchildren and great grandchildren.

  I can tell you so many stories and put you in touch with so many people if you will just give us a platform to speak. Please consider showing our quilts on your new talk show.

    God Bless you and I hope that something I have written will touch your heart and YOU MY FRIEND WILL BECOME OUR ANGEL.

   Sincerely.

Beth Illingworth

LupieBeth@webtv.net

Beth's Newspaper Interview

CONWAY _ Woven patches transformed into warm blankets and historical artifacts are on display this month at the Conway-based Horry County Museum. Quilts made by the Grand Strand Quilters _ a group of local people and visiting snowbirds _ will be displayed at the museum through Feb. 25.

Garden City Beach resident Beth Illingworth said she hopes visitors to the gala, which caps off the monthlong museum exhibit, will take the time to learn more about lupus, a chronic autoimmune disease. The immune system loses its ability to distinguish between foreign substances and its own cells and tissues and starts to make antibodies against the body. Inflammation may settle in various parts of the body, especially the skin, joints and kidneys. A quilt promoting public awareness of the disease will be among the close to 200 quilts from around the country displayed at the Horry County Museum's fifth annual Quilt Gala, Feb. 27 and 28 at McCown Auditorium, 801 Main St., in Conway.

Both events are part of the museum's celebration of quilting. ``We want to make sure people, especially the kids, will come and see what their grandparents, their great-grandparents did,´´ said Terri Hooks, the museum´s education director. ``We want people to see the handiwork and talent they displayed.´´

The lupus awareness quilt is arriving from California, said Illingworth, who is coordinating its arrival for the two-day gala. She and her husband, Keith, are organizing a reunion of about 20 lupus patients Feb. 26 to 28 along the Grand Strand.

The visiting quilt is one of five quilts that tour nationally. One of these quilts is a memorial quilt recognizing people who have died from the disease or any antinuclear antibody. All the quilts bear names of lupus patients. ``We do not have a lot of money for research, and many people still have misconceptions about what it is,´´ said Illingworth, 40, who spends many nights chatting online with other lupus patients across the country.

One of these people is Chelsea Arnett of Bourbon, Mo., whose daughter has the disease. Arnett started to work on a quilt in 1997 for The Lupus Foundation of America because she saw there was a need for more public awareness. Arnett called people she knew or contacted other people online requesting they send her scraps of material to make a quilt. Arnett completed four quilts.

Lupus affects one out of every 185 Americans, and although it can occur at any age, lupus strikes women 10 to 15 times more often than men, according to The Lupus Foundation of America. It is more prevalent in blacks, American Indians, Latinos and Asians. Although the cause of lupus is unknown, scientists suspect that individuals are genetically predisposed to lupus, and know that environmental factors such as infections, antibiotics, ultraviolet light, extreme stress and certain drugs play a critical role in triggering lupus,´´ according to a foundation pamphlet. Symptoms include transient joint and muscle pain, fatigue, a rash caused by or made worse by sunlight, low-grade fevers, hair loss, pleurisy, appetite loss, sores in the nose or mouth and painful sensitivity of the fingers to cold. The disease can be difficult to diagnose because some of the symptoms mimic those of other illnesses.

In Illingworth's case, she said living in the coastal region caused doctors to initially diagnose her splotchy, flushed skin and fainting feelings as sun poisoning. ``But I knew it was far worse,´´ she said, as she flipped through a scrapbook filled with testimonies from other lupus patients. ``In the past, they used to say women had dementia or were going crazy because they said they had these major changes happening to their bodies and no one believed them.´

´ More than a decade ago, Illingworth realized her diagnosis from a commercial on the disease. ``I had never seen it before but as I sat beside Keith and watched the TV, I knew that was what I had,´´ she said, adding she then asked doctors to test her for the disease. Illingworth mailed U.S. Rep. Mark Sanford, R-Charleston, a letter last year trying to encourage his support of a bill granting research money for the disease. In his reply last year explaining why he did not support the bill, Sanford wrote, ``You make an excellent point regarding the importance of research for this disease. As you may know, both the president and the speaker have endorsed the idea of increasing health care research by 50 percent over the next five years. While this is an admirable goal, we must also find spending reductions in other areas to offset the cost. That´s why I have not co-sponsored H.R. 1111 at this time.´

´ Illingworth had to quit working, and her days are now filled with fatigue and cocktails of medication. But one look at some of the letters she receives from other lupus patients indicates that Illingworth's efforts of trying to get the word out are not for naught. ``The support of friends and people such as members of the Grand Strand Quilters mean a lot,´´ Illingworth said. Members of the local quilting organization made about 75 quilt squares to be added to the awareness quilt that will be displayed at the gala, Illingworth said