Staying levelheaded while bouncing back from a life-changing visit to a walk-in clinic.

My name is Carter Sanders. February 2018 changed my life forever, as well as the life of my entire family. One Tuesday evening that February, I noticed some red bumps on my arms. I thought that was unusual and figured it couldn’t be chicken pox because I had them when I was 5. I assumed it was likely an allergic reaction since I was sweeping the floor that day. Then over the next couple of days, I noticed some blood blisters on my tongue and cheeks. I thought it might be hand-foot-and-mouth, considering I had that in the summer of 2014. I didn’t remember having those blisters in my mouth, but thought maybe it was a symptom that didn’t occur the first time I had the virus.

I was mistaken. I called the doctor to make an appointment to confirm the diagnosis, but he was out of the country. Since he was unavailable, I went to the Walgreen’s take-care clinic. Before I got there, I noticed an alarming symptom – my right eye was bloodshot. At the clinic, the nurses were astonished by what they saw. They told me it wasn’t hand-foot-and-mouth, but that it looked like some sort of bleeding disorder and that I was going to have to go to Urgent Care to get an immediate blood test.

A fighter’s lucky break.

I was diagnosed with ITP after suffering from heavy bleeding and undergoing a second blood transfusion. Although I was unable to come off steroids without dropping down to zero, I was lucky enough that six months after my diagnosis, I was able to go on a trial drug – eltrombopag – as an outpatient with my spleen, much to the disapproval of doctors. This helped for a year and a half before I stopped responding.

I went back on steroids as another trial was opening up soon. I waited months before I could start this treatment because I needed to have platelets less than 30,000 and could not be on any more than 10mg of steroids. This was a tricky situation to balance. I ended up plummeting and was admitted into the hospital with internal bleeding. It took five days to respond to a combination of immunoglobin and steroids, and I nearly had to have an emergency splenectomy.

Redefining brave
(As told by her Mom, Sarah)

Skyla was diagnosed with acute lymphoblastic leukemia in March 2016, and three months later she was diagnosed with ITP.

Treatment was underway for the cancer and ITP pretty much took a back seat, although her counts were constantly under 10,000. She often had blood blisters on the tongue, inside her cheeks and lips, and suffered a few episodes of uncontrollable nose bleeds which saw her admitted into hospital for a few days receiving bags and bags of platelets and blood.

Then came June 2017, when ITP didn't want to take a back seat anymore.

One day she started getting sick, and it was one illness after another. She complained of headaches every now and again, but it was the sickness that stood out more. I assumed she had a stomach bug, and since she’s also an oncology patient, I called the hospital to tell them about this “bug” and how bad it was. They suggested I bring her in to be checked over by a doctor. The hospital is an hour drive away, and she was continuing to vomit in the car and was getting very sleepy. I got her to the ward and a doctor checked her over, saw how lethargic she was, and we both just put it down to this “bug” taking all the energy out of her. She was admitted into a ward and started IV fluids.

No apologies, just a slow and steady stride to the finish line.

I was seven years old when my parents got the news that I had ITP. I had been feeling very tired and getting unexplained bruising. The extreme tiredness worried my mom most. I was admitted to a children’s hospital where I stayed for two months. No treatment, and my body started producing platelets again. That was 1979. I got on with my life.

In 2004, at age 31, I got a stomach bug which lasted a few days. Nothing unusual there, but I couldn’t seem to shake it and over five days I just got weaker. I was admitted to the hospital on day six, where they discovered I had AIHA – auto-immune hemolytic anemia. I had a virus and my immune system started attacking both the virus and my red cells. My red cell count was at 3,000 and I needed 11 blood transfusions and huge amounts of steroids and other drugs to keep me alive. I developed acute chronic fatigue and many other horrible side effects from the steroids, but after about a year I could say I was living normally again with no lasting damage.

Then strike three. In 2017, at age 45, I started noticing bruising. I went for a blood test and got a phone call from my doctor at 9:30 that evening. I needed to go straight to the hospital. My platelets were being destroyed and my count was less than 10,000. ITP again. This time they started steroid treatment right away and my platelets came up. But over the next two months, as we started to reduce steroids, my platelets dropped again and after four months I started on eltrombopag. I am still on that a year later.

At 78 years young, this former teacher continues to enlighten and touch the human spirit.

Jerry Jones considers herself one of the “lucky ones.” As a retired high school science teacher whose classroom was “connected” in 1995, Jerry mastered two skills essential to patient advocacy: identifying the problem and gathering information. Jerry knew that scientific studies are designed to answer specific questions on how to prevent, diagnose, or treat diseases and are critical factors in improving methods of health care. She also knew she had a global network of information and communication services at her fingertips and by entering a few select key words she could unleash a knowledgebase packed with the power to overcome ITP.

In November 2010, Jerry had some testing done when she happened to visit a health fair at the local hospital and the results revealed a 64,000 platelet count. Already scheduled to see her family physician in December, she brought the results with her. Concerned with the results, he checked her platelet count the day of her appointment and found that her count had dropped to 54,000. Jerry recalled how he was swift to point out that he didn’t feel that she had cancer but felt she should be seen by a specialist. “I’m sending you to see a hematologist and you are going to see the word ‘oncology’ on the door, but I don’t want you to worry. This is who you need to see,” he said as he reassured Jerry that he didn’t think it was cancer.

Perspective: A little boy touches the heart of a little girl with ITP in a big way.

“I’ve been through a lot,” began eighteen-year-old Talon Crist, “but every time something seems so bad, I think about how it could be so much worse – even on my lowest of days,” she continued. Talon’s journey with chronic illness began with an ITP diagnosis at age eleven and now includes other serious health issues and diagnoses, yet she sums up her journey in one word – perspective.

“When I think back to my life before I found out I had ITP, I think about having fun with friends, doing jujitsu and other sports – especially running – I loved to run. I had a ton of energy and was out doing what I wanted to do, but when I went to the emergency room for that bloody nose, my mom and I didn’t realize that it would hit me so hard,” she said. Talon recalled how they thought that ITP would be a “quick-fix thing,” that she would go home, the immune thrombocytopenia would go away, and she would get back to living her life, but what followed were daunting symptoms and horrendous treatment side-effects. “I had blood blisters in my mouth and throat, a ton of bruising – I had a really huge bruise on my hip - it looked like I was thrown down a flight of stairs and I remember people asking if my parents had done something to me and I would say no, but even walking in the halls at school was hard because being bumped with backpacks would even make me bruise, “ Talon recalled. “The weight gain from the steroids I took made me look like a chipmunk. My face was super round and chubby and I was eating all the time. Everything hurt, I was always tired, and my emotions were off the wall,” she exclaimed.

Diagnosed at age 4, Barbara Pruitt reflects on the challenges, celebrates the triumphs and looks to a bright and hopeful future for people with ITP.

As Barbara Pruitt stood greeting new attendees at ITP Conference 2018 she was introduced to a couple intrigued by the details of how she manages the disease.  “You live with a platelet count under 10,000,” exclaimed the attendee, “I can’t even begin to imagine how you do it!” Barbara smiled, shrugged her shoulders and replied, “I’ve had ITP since I was four.  It’s all I’ve ever known.”  In living a lifetime with the disease, Barbara has certainly seen the outlook for people living with ITP change.

“I didn’t know anything was wrong,” Barbara recalls, “but my mother was really worried about all of these black bruises I had.”  Growing up with three brothers, Barbara’s mother questioned the older two about fighting with their sister, but a visit to the doctor revealed what, back then, was called thrombocytopenia.   In the 1960’s, along with the diagnosis came one therapy to treat ITP - steroids.  “It was hard, there were severe side-effects – weight gain, water retention and sleepless nights,” she said and after three years of trying to control the disease with steroids, Barbara’s parents and hematologist decided it may be time to try removing her spleen.

How a little ITP Warrior transformed his journey into an adventure and gave back.

There are those who live life by the proverbial phrase, “When life gives you lemons, make lemonade.” And there’s the Krueger family, who when life delivered an ITP diagnosis to seven-year-old Cayden, they redirected the course down a road to adventure. Diagnosed just a few years ago at age six, this little warrior and his family refuse to let ITP win the battle.

Cayden’s journey began on summer vacation when his mom Jennifer noticed bruising – lots of bruising - bruising in odd places. As with most little boys, Cayden loved to play, loved contact sports and more than anything, loved wrestling with his then 16-year-old brother Cody. As a mom, Jennifer chalked it up to normal roughhousing and asked the boys to curtail the intensity of their moves, but as a nurse, she continued to monitor his condition. “When bruising got to the point, where as a school nurse I felt I would be calling CPS, I knew it was time to take him to the doctor to see if something was going on,” said Jennifer.

By Cyma Shapiro
Reprinted with permission, Matthews Beacon 2018

When the curtain goes up for the “Nutcracker,” danced by the Matthews Ballet and Dance, at the McDowell Community Center, one dancer in the group will be happy to be alive, well, and again dancing in this year’s production.

Matthews resident, Caroline Kramb, has been dancing with this group since she was four years old. She is now 15 and has taken on such roles as Angel, the lead – Clara, Chinese, Ginger Child, Waltz of the Flowers, Candy Cane, Spanish, Gold Angels, Party Girl and Soldier.

This year, as in previous years, she will exude the joy and passion that dancing invokes in many. “Caroline is a dedicated student with a passion for dance,” said dance studio Program Director Amanda Sheppard. “She loves performing onstage, and is always a joy to watch.” This year, she will dance the part of “Snowflake.”

A shocking diagnosis and last-ditch treatment effort harvests one of life’s greatest blessings.

Like many other people, it was never fully understood how or why I ended up with ITP. I was on the city bus one day with my husband, heading home from work. I felt a sudden jolt of panic, but I couldn't pinpoint why or what was wrong with me. We got off the bus a few stops early to get some fresh air and walk the rest of the way home. Another wave of panic set in and all I could repeat to him was, "Something is wrong, something is wrong." We went to the emergency room and they performed a few tests – EKG, flu test – and they gave me some fluids intravenously to hydrate me. They did not do a complete CBC and so they missed what was happening. In fairness, I had no clues to give them. I had told them that I was having a horrific menstrual cycle that would not stop bleeding. It was the heaviest that I had ever experienced, but I had very abnormal cycles. As I did, they chalked it up to my reproductive medical problems. They gave me pamphlets on heavy menstrual cycles and sent me on my way.