Informed, assured and in control: the life-changing event that took the mystery out of ITP.

A story about the discovery of a therapeutic approach to healing.

After 13 years of critical challenges and refractory ITP, an effective therapy liberates and renews hope for this young warrior princess.

My name is Ayla Charness and I have fought ITP for almost 14 years. I was diagnosed at 3-1/2, barely in pre-school, and am now 17 and just starting my Senior year of high school. When I was diagnosed my parents were told the same thing most families of kids with ITP are told, “give it 6-12 months and it should go away”. Of course, as my parents explain it, we should have known we were in for a bumpy road, five days in to the diagnosis. That is when I was admitted to the hospital for an 8-day stay because of bleeding they could not get to stop and low platelets that they could not get to come up at all. And to say it has been a bumpy road may be an understatement. That being said, I am so happy to share my story. I want to share both the good and the bad of my journey so hopefully people can understand that with the right amount of love, support and resiliency, you can succeed in spite of the challenges.

A seemingly normal day unveils irregular bruising and is the beginning of the journey for this young, active woman.

In September of 2005 I was diagnosed with ITP, immune thrombocytopenia. It was what I thought was a normal day playing a sport that I loved, Volleyball, and I noticed abnormal bruising that would not go away. The bruising lasted for nearly almost a month and I knew something was not right. ITP is an autoimmune disease in which your body makes antibodies against platelets. In autoimmune diseases, the body mounts an immune attack toward one or more seemingly normal organ systems. In ITP, platelets are the target. For anyone who is unsure, a healthy platelet count ranges from 150,000-400,000 platelets per microliter. My lowest platelet count throughout my journey before my splenectomy was 4,000.

A startling diagnosis baffles this grown woman who feels completely fine.

As a fatherless kid I was often teased for having "bad blood" and in my 60's that became true.  Initially, I thought the horde of freckles creeping up my feet and legs was just another old-age thing, but when they appeared where the sun don't shine, I decided to seek a medical opinion. Along with the zillions of freckles (purpura), I had more bruises than normal but being a klutz, I gave them no thought.  Upon hearing the doctors and nurses discuss calling for an ambulance, I said a prayer for that poor soul. Then they came into my room and identified me as having a horrendously long named, life threatening bleeding disorder where my immune system destroyed my platelets faster than they could be made.  Next, they explained that those freckles were pools of blood leaking from my veins...What?!  They actually plotted a safe route to the hospital, ordered me to not go home, not buy a magazine, not stop for lunch, not hit a pothole, not get in an accident, and try not to sneeze!  Yet I felt fine.

An unusual nosebleed and extreme fatigue on a flight home prompt this ITP Warrior to seek medical care.

My name is Manminder Singh Combow, but everyone calls me Mindy, lucky me, whereas I am a boy. I have been a resident of Houston, Texas for the past 10 years, but was born in Vancouver, British Columbia, Canada. As a young child, my family and I moved to Canada’s east coast to Halifax, Nova Scotia, which I consider my hometown. I am a dual citizen of both Canada (by birth) and the United States (naturalization, Jan 2017) but, as most Canadians are, especially proud to be a Canuck, not to mention, a Maritimer through and through. I enjoy playing/watching hockey, basketball, soccer, and, of course, cheering on the New England Patriots to a big win! I have a Bachelor of Commerce (BComm) degree and a Master of Business Administration (MBA) degree, both from Dalhousie University in Halifax, Nova Scotia. I have worked in the banking and financial services industry for over 20 years. In my previous life in Halifax, I was a Financial Advisor/Planner and grew a book of business of high net worth clients. After completing my MBA, I sold my client portfolio and moved to Toronto, Ontario. I worked in the financial/banking services industry there for 9 years with 2 large international banks in the downtown financial district (Bay Street). I was transferred to the US in 2007 by Scotiabank and recently accepted a new position with BB&T – Capital Markets, as Senior Vice President – Capital Markets - Corporate Banking..

Living with ITP uncovers an adolescent’s hidden human strength and gratitude.

I was diagnosed with immune thrombocytopenia (ITP) in February 2015.  Throughout this continuing period of medical care, I have received so much support from teachers, family and friends.  I am humbled by the love they show me, and I realize how fortunate I am to be surrounded by such caring people.  Going frequently to the clinical care center at Texas Children’s Hospital and seeing children younger than me diagnosed with cancer and other autoimmune disorders have helped me to appreciate just how fragile life can be.  It has helped me to keep a positive perspective with my own health issues and not let this autoimmune disorder interfere with living my life to the fullest.  I see more clearly the preciousness of life and try to share my positive attitude with my friends and family. I have grown through this personal challenge by being helpful, loving, and kind whenever I can, and try to always have a smile on my face when times get rough.  I trust that whatever comes my way in the future, my faith, family, friends and community will help me to remain strong, positive and loving to meet these challenges.

A little girl’s courage fuels the momentum of a BIG movement for ITP

A tenacious, young warrior right-sides his world after a shocking diagnosis turned it upside down.

My diagnosis of ITP was very shocking.  It turned my life upside down.  I had to learn about a disease I had never heard of before and change my lifestyle completely.  I had to deal with terrible symptoms from medication.  I could have just given up and taken the easy route, but I decided to use my experience to make a difference in the world.

As a high school student, I was involved in typical activities.  I took AP classes, wrestled, did community service, and played video games.  After my diagnosis, I had to focus on my classes and my health, but I gradually started doing more, and now I am involved with more activities than before my disease started.  It has been extremely tough at times.  I have struggled, but I am slowly becoming a much better person. 

Recorded at ITP Conference 2017 in Phoenix, AZ, Joan talks about her unique journey with ITP... from diagnosis to remission.