I was filled with great anticipation and nervous excitement exactly one year ago as I would finally get to meet the five fabulous women on the celebrity panel in my book, SHOWgrins. I had grown to love, admire, and respect these remarkable women who I will forever refer to as my “Fab Five.” It was the first time we would all make a national appearance together as we celebrated the book launch which was being held in conjunction with the Sjögren’s Syndrome Foundation (SSF) National Patient Conference. What I didn’t know at the time is that would be the one and ONLY occasion the Fab Five would ever be together.

From left to right: The Fab Five at the 2013 SSF National Patient Conference for the “SHOWgrins” Book Signing Extravaganza – Lynn Petruzzi, Paula Sosin, Estrella Bibbey, Cathy Taylor, Judy Kang, and me (Betty Collier)

Yesterday, I received an email from Steven Taylor, the SSF CEO. The subject line read “Judy Kang Passed Away.” My heart dropped, I left my office where I was reading the email, and retreated to my bedroom. I began to grieve in heartbroken sorrow. It was like a slide show running through my mind as I remembered that weekend in Bethesda where I met five of the most incredibly courageous women I’ve ever had the pleasure to encounter: Cathy Taylor, Estrella Bibbey, Judy Kang, Lynn Petruzzi, and Paula Sosin.  When I said one name, I said all five. How I loved each one of them. Collectively they were simply the Fab Five, my Fab Five, but now there were only four.

To backtrack just for a moment, Sjögren’s (pronounced SHOW-grins) syndrome is the second most common autoimmune disease affecting approximately 4,000,000 Americans. Because the pronunciation as well as the disease itself is often misunderstood, I entitled my book SHOWgrins to bring about awareness of this sometimes silent and confusing illness. Of the millions of people with this disease, I chose Judy Kang as one of the Fab Five to share her inspirational Sjögren’s journey with the world. My book chronicles the lives of these five extraordinary women who opened their hearts and shared their Sjögren’s stories for everyone to understand more about this disease to help increase awareness and expedite new diagnoses and treatment options. My hope was to inspire millions with their heartwarming stories so that others would be encouraged and motivated to face crossroads in their own lives.

But now my sweet, dear Judy was gone. I had lost one of the Fab Five. I wondered of all the millions of Americans with Sjögren’s syndrome, why had I selected her as one to interview for my book? My heart was breaking, and for a brief moment, I wished I had never known her. Then I would not be in such terrible pain right now trying to pick up the pieces to my broken heart. Then as quickly as that thought entered my mind, I suddenly realized that’s exactly why I had chosen her. She had such a profound impact on my life; she was chosen because her incredible story of triumph and victory over learning to live with Sjögren’s is a story so many struggling people desperately need to hear.

I returned to my office to reply to Steve’s email, but I couldn’t see the computer screen for all the tears swelling in my eyes. My husband walked in and asked what I was doing, and I simply said “replying to an email,” but he knew it was much more than that. With tears rolling down my face, I mumbled the words I should have known I would have to face one day: “One of the women in the book passed away.” I couldn’t even say her name, and now that I’m sitting at this computer screen a day after learning of her passing, the tears are making it nearly impossible to see what I’m typing.

Judy and Betty

Judy Kang, a woman of great faith and fortitude, lived her life to the fullest, amidst the uncertainty of not knowing from day-to-day what health challenges she would face, as there were countless of them for many years. Some days she never even knew where her next breath would come from. She summarized her battle with Sjögren’s like this: “In 1996 I was diagnosed with a lung illness which they realized was caused from primary Sjögren’s syndrome. I was on oxygen for 9 years and in 2010 managed to get a double lung transplant. I still have symptoms of Sjögren’s but luckily have a renewed life.”

Her double lung transplant was a journey all by itself. She kept an electronic journal, and the very first entry she wrote while still in the hospital was this: “Whew!  I just finished reading all the journal entries my husband wrote throughout my surgery and “visit” in ICU.  I was crying buckets as I realized what he was going thru and how hard that must have been to be alone. I am amazed at what he did and it just reaffirmed how wonderful he is when I really thought he was in denial of my illness. JY, you really amaze me. You are the best hubby in the world… I have the best family and friends in the world!!  I can’t believe you all followed along and sent prayer after prayer and all that positive energy. You know I was receiving them all because I came out with flying colors. Well, I had NO idea what I went thru because I was so medicated.  But those prayers and karma and positive energy brought me to where I am.”   

She returned home 2 months after the transplant surgery to begin her new normal with the loves of her life, her loving and devoted husband, J.Y., and their two precious children, Ethan and Emily. When her health was better, she even did volunteer work for both the Donor Alliance and the SSF. She has been the guest speaker for many of their events, sharing her remarkable journey which has encouraged and motivated countless others.

So as I reflect back on the courageous fight Judy endured for all those years after being diagnosed in 1996, I can’t believe that for a few seconds I actually thought I would have been better off not knowing her. I simply didn’t want to go through the pain and agony of missing her. But Judy taught me a very valuable lesson. I’m stronger than I was before I met her. The encouragement and inspiration she has given me is absolutely priceless, and I am a far better person for knowing her. When I interviewed Judy for the book, I asked what would her message be to others facing challenges in life. She replied, “Surround yourself with a good support system. Make sure you have a good network of people who understand what you’re going through. Maintain a positive attitude. Keep a good outlook on things. Believe that something will work out. Live your life in a positive way and deal with things as they come. Take what life throws at you, and do your best with it. Never give up, and continue living your life.”

That’s exactly what Judy did, and her message will live on forever. I wanted to go back and read her chapters from the book, but I simply couldn’t bring myself to doing that yet. I will one day, and I’m sure I will learn an even greater lesson as I read what I wrote about this dear warrior and her battle. Others will read my book and be encouraged not only from Judy, but all of the Fab Five. As one reader described it, “I felt the women’s pain, their frustrations, their hopes and their determination to push against the pressure Sjögren’s syndrome has put in their lives. All of their stories are well-told by the author, portraying their life before their diagnosis, as well as the challenges they faced when they knew they had the condition. Their bravery and the love and support of their family against the medical, social and mental stress Sjögren’s syndrome can bring are inspiring and heartwarming. Estrella, Judy, Lynn, Paula and Cathy have all managed to make the best of their situation, and have dedicated their lives to promoting awareness of this condition. Their stories, together with the author’s own journey, inspire not only those with Sjögren’s syndrome, but everyone who has had life-changing challenges and problems.”

The saddest part of this story would have been if I was never blessed with the wonderful privilege of meeting Judy.  I am truly honored and filled with unbelievable gratitude that she shared her life with me and trusted me to share it with the world. I realize that I haven’t really lost one of the Fab Five after all.

From left to right: Cathy, Estrella, Paula, Betty, Lynn, and Judy (never lost and never forgotten)

I will forever have very fond memories of all five of these truly remarkable and courageous women. They will never be lost and never forgotten because they allowed me to share their transformational stories with the world. As Steven Taylor told me, “Judy’s story reminds us why our fight is far from over!  Her memory will keep us all moving forward to ensure every patient is diagnosed and monitored so that serious complications can be stopped early.”

For more information about the SSF, visit sjogrens.org.