It’s said that everything happens for a reason. Someday you’ll look back on this and be thankful. You’ll be able to see what it’s taught you. When my daughter and I were first diagnosed with Platelet Storage Pool Disorder (PSPD), I had a hard time finding the good in anything amidst all the frightening doctor visits, endless testing, thousands of questions, and unknowns to decipher through. That was four years ago and so much has changed. I wouldn’t be who I am today if it weren’t for having a blood disorder. I have reason to be thankful now. These are the five most important things having a bleeding disorder has taught me:
1. Finding friends, family and members of the bleeding disorder community who love me even when I’m not at my best.
My life is filled with so many ups and down because of our diagnosis. It’s very easy for me to get so consumed with my own life that I have a hard time giving attention to relationships with friends and family. Since our diagnosis, I’m thankful that I’ve found friends and loved ones who will be there for the long haul. People that are just happy once we finally get to hang out. I’m also grateful for all the relationships I’ve made within the bleeding disorder community. Local chapter events, social media, and national bleeding disorder events have given me the opportunity to meet others who know my struggles and don’t judge me for my flaws. They understand the road we’ve traveled and can provide support like no other. It’s these unconditional relationships that have kept me going at my toughest times. On the days when I think I just can’t take anymore there’s always certain friends, family, and members of the bleeding disorder community who I know will love and support me no matter what. I truly cherish all of them.
2. Finding the confidence to stick up for myself and be my own advocate as well as one for my daughter.
I’ve always felt like I had to defend the bruises that covered my body. Living undiagnosed for thirty-three years adds up to a lot of defending. When we were finally diagnosed, I had to start defending our disorder and the restrictions that doctors were putting on my daughter. But through this, I’ve gained the confidence needed to advocate for us. Â Only my daughter and I know about our daily fears and struggles. We know our bodies and symptoms more than anyone else, and we don’t let anyone tell us differently. My daughter has become a huge advocate for herself as well, and I couldn’t be more proud. She views her disorder as something that will make her stronger in the long run and doesn’t let her restrictions bring her down.
3. Teaching my family the importance of giving back.
One of the biggest changes I can say our family has made since our diagnosis is understanding the power of giving back. Whether it’s fundraising, volunteering, or donating, we’ve learned the significance of these selfless acts. Through having a bleeding disorder and being involved in the community, I learned just how important it was. Most chapters, non-profits, and federations base all their resources on the amount of fundraising they get! Not to mention most of the medical research for rare diseases must be funded by others. I’m amazed at how complete strangers are willing to donate money to something they know nothing about. I’ve seen true compassion in people and I’ve been brought to tears by people’s selfless ways.
4. Finding hope for the future.
Upon my initial diagnosis, we were told our disorder was super rare and the likelihood of finding others like us was slim. When I first started researching, there weren’t many case studies, or articles that focused on PSPD. For more than a year I felt hopeless and alone. Then I started joining Facebook support groups, writing a blog, and attending chapter events. Once I started sharing our story and meeting others from the community the feeling of loneliness and fear slowly turned into hope. Hearing other stories of what families had been able to prosper through was inspiring. I was able to find the light at the end of the tunnel in most instances and I feel like we are learning more and more every day. More and more people are getting diagnosed with platelet disorders. I can only hope this is getting us closer to a cure. Platelet research is becoming more common and I can feel that a big change is coming in our future.
5. Finding my true passion.
Since childhood, I’ve always felt like I had a purpose to be here. Something was telling me someday my voice would be heard and that my future would be filled with meaning. But I was walking through life with no meaning and no passion before I was diagnosed. I started blogging in 2013 to express what was going on in hopes of finding others who were going through something similar to my family. And now I can truly say I believe this has led me to my passion. I’ve found that I love writing and sharing our stories. It has become such an amazing tool for me to work through what’s going on in my life, all while helping others feel less judged and alone, and more supported. I wouldn’t be where I am today if it weren’t for our diagnosis of PSPD. I now surround myself with positive people who love me unconditionally. I’ve found the confidence to mold my daughter and I into strong personal advocates of our bleeding disorder all while learning the importance of giving back. I have hope for the future and can confidently say that sharing our story and using my voice to help support a cause has proven to be awarding ten fold. Kari lives with her husband, Ryan, and 6-year-old daughter, Scarlett, and 2-year-old son, Walker, in California.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
