ONCE UPON A GENE - EPISODE 160

A Mom's Advocacy For Her Son Who Has Hemophilia B Led to Her Own Diagnosis - With Stormy Johnson

Stormy Johnson has a son diagnosed with hemophilia. She was told she was just a carrier for the disorder. This assumption, born from the fact that mostly men are diagnosed with hemophilia, meant she didn't have answers for symptoms that were plaguing her. Other hemophilia patients encouraged her to dig deeper, which led to an even tougher road of being seen by medical professionals. Stormy is storming the castle to let everyone know that women are in fact more than carriers- she's an advocate doing great work for women with bleeding disorders. 

EPISODE HIGHLIGHTS

Can you share your son's diagnosis journey?

When I was young, I was aware of my male cousins with something wrong with their blood, but that's all I knew. When my son was three, he had his tonsils removed and he had complications in recovery that led to emergency surgery. Initially doctors thought maybe he had a bleeding disorder, but he was released after a few days. A couple months later, he had blood in his urine that I attributed to a kidney blockage he had recently had. At a pediatrician's appointment, she recalled a patient with a bleeding disorder and she thought it was a good idea to check into things further. After my son was diagnosed, I realized what my cousins had was also hemophilia and that it affected others in my family as well- male and female.

How did you find out you also had Hemophilia B? 

When I would lose molars as a kid, I would bleed a lot. I also bruised easily. I had a laparoscopy when I was 18, which required a blood transfusion. There were always signs, but it was never questioned. After my son was diagnosed, I had testing done and took the results to the treatment center my son went to and I was referred. I was 47 when I got diagnosed. 

What has motivated you to become an advocate?

I found my voice at just the right time. I was terrified of speaking or talking to doctors, but I've learned so much through my experiences. Advocating is from my heart and it's not about me. Everything I do is for the community and it's been an amazing journey for me and my family. 

What is your advice for women or even girls who may be listening and need tips for advocating for themselves and their healthcare concerns?

It's very important to keep good notes and record everything. Speak to parents, siblings and family members who can shed light on childhood health matters or other family health history. Most importantly, don't give up. Fire your doctor and find another doctor. There's always someone out there who will fight with you, you just have to find them.

LINKS & RESOURCES MENTIONED

Portraits of Progress

https://www.portraitsofprogress.com/

Bad Blood

https://www.imdb.com/title/tt1773294/

BloodStream Media

https://www.bloodstreammedia.com/

Remember the Girls

https://rememberthegirls.org/

Sisterhood for Women Who Bleed on Facebook Group

https://m.facebook.com/groups/235001807617544

Sisterhood for Women Who Bleed on Instagram

https://www.instagram.com/vwd_hemo_sisterhood/

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