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Turning the tide for rare disease

What I learned raising a son with haemophilia: Stormy’s story

When Stormy’s son Collin was diagnosed with haemophilia 20 years ago, she found in the haemophilia community not only a loving support network but also the key to understanding her own medical history. Today, Stormy is a passionate advocate for her community, and is especially keen to spread awareness about how women may be more than just carriers of this rare bleeding disorder

A rude awakening

One morning in 2002, Stormy’s son Collin woke up in his little toddler bed with his face plastered in blood. Stormy rushed him to the doctor, who immediately sent them to hospital for emergency surgery. The doctor suspected a bleeding disorder—Collin’s tonsils had been removed a few days before the incident—but ruled it out because the bleeding stopped.

A few weeks later, blood started appearing in Collin’s urine, and a paediatrician referred him to a haemophilia treatment centre where he was finally diagnosed with haemophilia. This was the first time that Stormy had ever heard of the condition. As she now knows all too well, haemophilia is an inherited bleeding disorder that affects the blood’s ability to clot, making people with the condition bleed for longer than usual.

“I’ll never forget the day Collin was diagnosed—it was emotional in many ways, but when you get an answer, you kind of feel better.”

As a young mother, Stormy was scared to death. She was told she would have to start being careful about things like Collin accidentally hitting his head. Her first distressing thought was that she could not play with her own child. But being the type of person to face things head-on, she started educating herself. The local chapter of a haemophilia organisation provided books about haemophilia for Stormy to take home as there was not much online at the time. So, she started reading to learn more about what her son’s condition was, where to set boundaries and how to adapt to a new lifestyle.

Life post-diagnosis

Stormy and her husband did not want to treat Collin any differently now that he had been diagnosed with haemophilia. Foreseeing that there would be times they would have to say “no” to him, they resolved to say “yes” to him as much as they could, so Collin knew a “no” came with a good reason. Naturally, they put safety rules in place for him when he was first diagnosed: no longer would there be climbing wooden stairs in socks, for that was an accident waiting to happen. There were other changes too, such as taking ice packs and medication out with them, even if they were leaving the house for an hour.

However, Stormy and her husband encouraged Collin to feel comfortable about his diagnosis and to be vocal about it to his friends, so that they knew the implications and would get treatment for Collin if he was hurt—whatever the cause. “I would tell his friends, if there’s an injury, you come and tell us. We’ll worry about what you were doing later.”

“When his little legs were going fast and he fell, I’d want to run and pick him up and put him in a bubble. But my husband was really good about reminding me: he’s got to live.”

This balanced approach meant that Collin actively sought independence: he wanted to infuse himself and take care of himself, no matter what. Seeing him gradually take control of his disease and ultimately gain the ability to take care of himself took a lot of concern from Stormy’s shoulders.

Now, Collin is 23 and has a life of his own. His friends have watched him infuse himself several times; they have been shown how to mix medicine and know exactly what to do if something happens.

Stormy’s own diagnosis

When Collin was diagnosed with haemophilia, Stormy was told she was just a carrier for the disorder. This assumption, born from the fact that it is mostly men who are diagnosed with haemophilia, meant that for a long time Stormy was left in the dark about her own health.

It was only when Stormy started attending her local chapter and was repeatedly asked about her own factor levels that she discovered how low they were. In 2015 Stormy finally received her own diagnosis of mild haemophilia.

Yet, throughout her life, there had been signs and symptoms that were suggestive of the disorder, Stormy reflects. For instance, after a laparoscopy (keyhole surgery) to investigate suspected endometriosis at the age of 18, she needed to have a blood transfusion—amid the contaminated blood scandal of the 80s—and to stay in hospital for two days.

Among many other issues, Stormy also experienced really heavy periods, lasting for as long as 47 days, four miscarriages, and considerable pain in her back and hips. To try to stop her bleeding, she was prescribed birth-control medication and even put on injections usually used to treat male prostate cancer. Stormy went through a lot but was told “it is what it is”.

The haemophilia community

After Stormy’s diagnosis, she attended more meetings of her local chapter, national events and women’s retreats. There she met groups of women with haemophilia, all of whom had been similarly let down by the healthcare system. In some cases, their late diagnoses caused a lifetime of unexplained bleeding that had resulted in joint damage.

Inspired by their journeys and her own, Stormy became passionate about spreading awareness about haemophilia, particularly about how it affects women. She wants to ensure that women with bleeding disorders are being heard, diagnosed and treated properly. At conferences she has spoken about women with bleeding disorders, and she also sits on advisory boards. Some of the organisations she is affiliated with are the Coalition for Hemophilia B, the Hemophilia Federation of America and National Hemophilia Foundation.

“I’m passionate about helping women and people in general. I try to bring awareness and help women find diagnosis, treatment and doctors. I think knowledge is power. And as much as we know, there’s still a lot we don’t know.”

In these events and institutions, Stormy has found a loving and supportive community. She has become good friends with many of the people she has met; she is particularly grateful for her friends from the older generation who helped pave the way for the women who followed them. Stormy hopes she can now be the voice for her own generation’s daughters and granddaughters, who may be unaware they could possibly have this rare condition.

“As important as education is, and how helpful retreats, support groups and events are, the friendships you make are invaluable. Everybody loves each other and everybody’s there for each other.”

Stormy describes how you can walk into a local chapter of a haemophilia organisation, knowing nothing, and be given support. Most states have at least one chapter of a haemophilia organisation, and each will do a great deal to support the individual. For example, they can provide medical alert bracelets, dental insurance, dental cleaning and funding to attend national conferences. 

Above all though, these local and national meetings also provide a sense of community for people affected by haemophilia—there are people you can relate to and there are role models you can look up to. Stormy says that just thinking about some of the friends she has made warms her heart. In fact, she is still friends with one of the first families she ever met, and Collin is still friends with several kids he went to camp with when he was seven years old. Although haemophilia has brought pain to Stormy’s family, the community has brought back joy.

Stormy feels honoured to continue playing her part in improving care for people with haemophilia. In Portraits of Progress, an exhibition to celebrate the ongoing progress in understanding and treating haemophilia, she was photographed by the acclaimed British photographer Rankin, and her story was shared with a global online audience. This aligns with Stormy’s goal of spreading awareness about haemophilia so that girls are diagnosed early and receive proper treatment.


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