September is Immune Thrombocytopenia Purpura (ITP) Awareness Month! ITP is a rare bleeding disorders characterized by a low amount of platelets in the blood. Platelets are needed for clotting of the blood. In patients with ITP, a person’s immune system creates antibodies that mark healthy platelets as “foreign substances” and then mistakenly attack and destroy them. As an autoimmune disease that results in the destruction of platelets, patients with ITP tend to bleed or bruise. Worldwide, it is estimated that there are over 200,000 people affected by ITP.

This month, we are taking some time to highlight one of our brave ITP Warriors, Jordan Adams, and her journey of living with ITP. In a recent interview with our BCDI team, Jordan explains her experiences living with a bleeding disorder and how BCDI has helped empower her to live a “normal” life.

 

BCDI: When did you first become aware of a potential bleeding disorder?

Jordan: I first became aware of my bleeding disorder when I woke up one morning and I was covered in bruises. I had bruises on my hands and in between my toes. I had no idea how I got them. I was also covered with petechia, and I thought it was the weirdest rash. I was first diagnosed with mono and treated for almost a whole year. When I wasn’t getting better my family thought it could be something else that was way worse. My mom thought it was some sort of cancer, like leukemia.  Come to find out it was a rare bleeding disorder, Chronic Idiopathic Thrombocytopenic Purpura (ITP). My ITP was found by doing a bone marrow test in the hip.

 

Q: At what age were you diagnosed with ITP?

A: I was 10 years old at the time of my diagnosis- almost 18 years ago- and it was found with a doctor out of Springfield. I was referred to Dr. Tarantino by him because he specializes in bleeding disorders. My family reacted any way a family would react to life changing news. We were all scared and didn’t [know] what to do, we never understood how this happened or why, but it would change all our lives forever. I used to play softball, basketball, track and field and was also a part of show choir. I didn’t know that after my ITP diagnosis that my entire life would change- I wasn’t prepared for that.

 

Q: What was your first experience with BCDI and how did you learn about the services offered?

A: My first experience with BCDI was back when they were a smaller organization. I learned about them because I was referred to by another doctor. I remember very fondly the workers at the front desk, my nurses, and even Lyberti who at that time was the person who would perform lab draws on me. Of course I will always remember Dr. Tarantino.

 

Q: How has BCDI played a role in helping life become more ‘normal’?

A: BCDI has helped my life become more normal in the sense that they have made me and my family more aware of my disorder and they are able to answer the questions that have been asked throughout the years. My life through the years has gotten more manageable because of the different medications that have been on. I was 1 of 10 children that took part in the Nplate study that Dr. Tarantino conducted, and I was on that medication for a few years. Afterwards I was a part of the Doptelet study, and I am currently on that medication, and it has changed my life.

 

Q: What have your experiences with receiving care at BCDI been like?

A: My appreciation for BCDI is more than I can put into words. I have been so thankful and grateful to the team because they have made me understand my disorder more and helped me live with it.  I absolutely would recommend BCDI to others. I have never felt more at home in a doctor’s office than I do when I come to visit this office. I was able to go to school and become a certified phlebotomist. I am still planning on going back to school to further my medical education. I also got married and was able to educate my husband and his family on this disorder. My journey with ITP has been long, and it certainly hasn’t been easy. However, with the help of my doctors, nurses, and staff at BCDI I have been able to live this life and be able to share my experiences with others around.