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Cinnaminson Women with Lupus Walk for a Cure

Kara Shaw and Pam Thomas want to make people aware of the disease that affects their everyday lives.

There are some days that Kara Shaw doesn’t even want to get out of bed. Her ankles, wrist and neck joints are so inflamed, they hurt every day. The longtime employee had gone to doctor after doctor, did physical therapy with no results and had multiple tests done.

“I just wanted to know what was wrong,” Shaw, now 20, said. “It was so frustrating and overwhelming—I just wanted to know what was causing this.”

Two years ago, Shaw was diagnosed with lupus, an autoimmune disease where the body’s immune system attacks healthy tissue. Shaw’s joints are affected and she’s often fatigued.

Another Cinnaminson native, Pam Thomas, has very different lupus symptoms. Thomas lost a lot of her hair and has red marks on her forehead. It took about four years for Thomas to be diagnosed with the disease; her skin is the organ it affects.

“I thought I just got really bad sunburn,” Thomas said of first noticing the symptoms. “I’m on medicine for the rest of my life. I can’t go out in the sun or I’ll break out into a rash. My hair isn’t growing back. That’s a big thing for a girl.”

Thomas, 28, has to wear SPF 70 sunscreen daily—and a hat for extra protection on sunny days. Shaw said she stopped taking some of the medications prescribed for her because they just didn’t help. She just takes Aleve for her pain now. 

But both of the women want to raise awareness for their disease and are doing so by participating in the 4th Annual South Jersey Walk for Lupus Now on the Ocean City Boardwalk on Sunday, May 20.

Shaw, a nursing school student, actually found out about the walk through Thomas’ sister, who posted it on her Facebook page.

“My sisters told me they were going to do it for me,” said Shaw. “I want to make people aware of what it is and how many people are actually dealing with it—what it does to your body and how painful it is.”

Thomas and her family and friends walked last year and have a team heading down the shore this year, too.

“I’m trying to get people involved,” Thomas said. “People don’t realize it’s a bad disease to have. It was a really traumatizing experience when I first found out. It’s something you have for the rest of your life. It could affect any organ in your body—I’m fortunate it’s only my skin.”

The annual 2K or 4K walk raises funds for the Lupus Foundation of America—Philadelphia Tri-State Chapter. Shaw’s mother Renee said she and her family are walking for Kara to find a cure.

“The more we looked into it, the more we thought people should know about this,” Renee said. “I would love to see a cure for this. If they need money to be raised, then I’m all for it.”

Thomas, who now lives in Riverton, has taken lupus awareness a step further by writing both Sen. Diane Allen and NJ Rep. Robert Andrews. Unfortunately, she’s never received a response.

But she’ll be out there with friends and family on a team to walk on May 20. As of mid-week, Shaw and her team had 27 registered walkers and nearly $1,500 raised.

To see Shaw’s donation page, click here. To see Thomas’ page, click here.

For information on the and the Lupus Foundation of America, click here.

Jamie Lyons May 11, 2012 at 12:21 PM
Ms Shaw, If I may make a suggestion. My wife was told the same thing after every doctor she saw and all the tests. Turns out it was Lyme disease!!! She had to see a Lyme disease specialist near six flags. The normal Lyme disease tests are in accurate. Go see a Dr by the name of Dr Striet in Howell Nj. After a positive test showing Lyme disease she has been being treated and is feeling much better. Please just go see him...they told my wife it was Lupus at first. I wish you well.
JS May 11, 2012 at 01:04 PM
Good advice from Jamie above. I spent years with rheumatoid arthritis (another autoimmune disease) triggered by misdiagnosed lyme disease. Very painful and swollen joints and the accompanying fatigue which felt like mono times 10 (not an easy task with 4 young children). When they finally figured out what it was, I was put on a medication that kept my joints from staying swollen and becoming damaged, and in turn, controlled the pain. Make sure that they are controlling the swelling so there is no permanent damage to the joints. Eleven years later, I'm in remission with only occasional flareups and no crippling at all. Prayers to you.
Matt Bacon May 11, 2012 at 02:05 PM
Hi Kara, Everyone at Whistlers is very proud of you for walking to find a cure for lupus. For anyone who may wonder, Kara has dealt with lupus the same way she deals with every problem she's ever had. Head on, with a smile, and pure determination. If any family can make progress in battling something like lupus, it's the Shaws. Good Luck!
FbS May 11, 2012 at 02:29 PM
way to go Kara and Pam!!!! I salute you!!
Kristen Shaw May 11, 2012 at 02:48 PM
I could not be more proud of my sister Kara. She is the most determined and motivated person I know. Even in her days of pain she will try harder and harder to make sure her life stays as normal as possible. Thanks to everyone who's been such a big support throughout this ongoing battle, our words can't express how appreciative we really are. Women like Kara & Pam really do inspire others to not give up no matter how bad things really get! Go Team Kara!!
Brandi Mochernuk May 11, 2012 at 03:25 PM
GO TEAM KARA!!!!!
Jamie Lyons May 11, 2012 at 03:39 PM
Please let me expand on my previous post. The typical test for Lyme Disease was developed in the 1980's when there were only a few known strands to identify Lyme Disease. Since then, scientist have discovered many, many more strands that are inherit to Lyme Disease. However, the test was never updated....hence the negative results and inaccuracy. There is a company out of California (Igenex) who have developed a Lyme Disease test that detects most of the strands. That is how my wife was diagnosed. She was previously diagnosed with arthritis, chronic fatigue syndrome, Lupus and everything else. Then by the grace of God someone told us to go see Dr Striet and he ordered the test. Insurance companies will NOT pay for this test so it comes out of pocket. However, my wife had over 5 strands identified....Chronic Lyme Disease!!! A quick note on Lyme Disease...the science community is just learning that some people DO NOT always get the "Bullseye" from a tick bite. So some doctors rule it out for that reason and do not test for it. And when they do...they test with an outdated test. That is why over 90% of Lyme Disease go undiagnosed. Please...Please...go see Dr Striet in Howell NJ. He has been a LIFESAVER for so many people. My heart and prayers are with you Ms Shaw. There is light at the end of the tunnel.
Kate Shaw May 11, 2012 at 03:50 PM
What an amazing article!! Go team Kara.. youre the strongest girl i know xoxo i love you a million
Christina Paciolla (Editor) May 11, 2012 at 04:19 PM
Both of these ladies deserve all the support they can get. I grew up with Pam in Cinnaminson, just a backyard away. And I saw Kara and her family every single weekend at Paula's (where I worked) about 10 years ago. They are two beautiful, strong women. Good luck!
John Rooney May 11, 2012 at 04:35 PM
Christina, thank you for this great article. My wife, Valerie, and I have been supporting the LFA’s events for the last two years when our daughter, Caitlin, was hired as the Community Development Manager for Lupus Foundation of America, Philadelphia Tri-State Chapter. We have volunteered at the Ocean City Walks, the Lupus Loop and the Lupus Links Golf Tournament. I am really proud of the Cinnaminson Police Department and the other Cinnaminson organizations and businesses that have donated to this very worthy cause.
Linda May 11, 2012 at 05:41 PM
Hi. My name is Linda. I was diagnosed with Lupus 2 yrs ago. I have pain every now and then. The medicine I take seems to help. I have a great doctor. I can't be in the sun or I have painful flair- ups. I will try to make the walk in OC.
Janeen Thomas May 11, 2012 at 09:02 PM
Thanks for the article Christina! Great job. Excellent idea to post an article for this cause, as many people are completely unaware or uneducated about this disease. I watched and continue to watch my sister, Pam, struggle with this for years. She too, had the physical pains along with the hair loss and skin symptoms. Pam has persevered and continues to fight each and every day. The strength and determination I see in my sister is truly admirable. I'm proud of you Pami and look forward to walking to support you and all the people suffering with lupus. I Love you little sis. Xoxo
Janeen Thomas May 11, 2012 at 09:03 PM
GO TEAM PAM!
concerned town person May 22, 2012 at 07:09 PM
There is a local woman how run's a business and donates 10 to 15 percent of her business. If you need help raising money. I wish I could help donate find a cure for crippling diseases.

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