When I was first diagnosed with immune thrombocytopenia (ITP), I was searching the internet for any guidance on how to navigate this new life. There was a ton of medical information out there, covering effects on the body and physical things to look for, among other topics.

However, I wanted to hear from real people living with this, so I took to social media to look up every hashtag related to ITP.  It led me to a whole community of people!  I created an Instagram page dedicated to my new ITP journey and started connecting with anyone I could find. 

Read about HCP resources for ITP

I was amazed at how many people I found who also had ITP. It wasn’t a ton considering it’s rare, but over the last 3-plus years it has sadly become a bit more common, so I was meeting more and more people.

There is something comforting about talking to someone who understands what you are going through. They can relate to how you feel and are thinking. It allowed me to create new friendships, and have open communication about ITP and how others were handling it. I’ve noticed that not 1 ITP case is the same. All these fantastic patients with ITP I had been meeting, had different experiences, different treatment plans, and different struggles, but we all had ITP. 

The first year of my diagnosis I was scared and hearing advice or tips from other patients with ITP helped. It calmed me a bit and helped me worry a little less. I recently asked a few of my fellow patients with ITP if they had any advice or tips to share with someone newly diagnosed.

I thought this would be a great time to share their insights and hopefully give some hope to those going through the ITP journey. 

Here are some words of wisdom from my fellow ITP friends:

Jose: “This is an ITP roller coaster. Live your life how you want to live it and don’t let any doctors control your life. Yes, I have ITP, but I’m having an amazing life.”

Carrie: “Listen to your body. If it says rest, it’s OK to rest. But also, don’t let ITP control your life. You can still have fun and have an amazing future.”

Christine: “There is a quote I like to remind myself of when I feel like things are too hard or I want to quit treatment. “Every time you thought you couldn’t get through, you did. You are strong.”

Vanessa: “There is going to be wonder, insomnia, anxiety, and worry. Ask all the questions, meet with the hematologists your (primary doctor’s) practice offers until you are comfortable with the care you are receiving and the team giving it.”

Taru: “I would recommend getting in touch with other patients with ITP and reading about the illness cause for me. I often know much more about the fact than my doctors.”

Alfredo: “I am still working on this myself. It is easier said than done, but this is the time to go deep within yourself and confront your traumas to release them and free that energy from the body. All diseases trap or block energy in the body. Meditation and grounding have helped me stabilize and even get to normal ranges at times. I notice (that) when I disconnect from my true self, my levels drop a lot. Last but not least, stop identifying as a sick person. I was diagnosed with ITP, but I am not sick, and I will heal soon.”

Shaunice: “Always remember you are stronger than ITP.”

Jen: “Don’t let this rare disease get to your head. Sometimes we dwell on numbers and bruises but the key to overcoming this is to have a positive mindset. Obviously, this isn’t a cure, but you have to stay positive”

If you’re new to ITP, I hope you can find some comfort in these words.  If you’re an ITP veteran, maybe you’ll still read something that can help.  Just remember, you are not alone.