Carrying the Von Willebrand gene comes with a 50% chance of having the condition, and Michelle’s family knows those chances well. In fact, they even share an inside joke about being part of the ‘lucky’ 50% who inherited it. With 7 out of 8 family members living wit h Von Willebrand Disease (VWD), Michelle has witnessed the condition across all kinds of life stages and moments, giving her a deep understanding of the condition. 

Her mother was the first in the family to be diagnosed, during a dental procedure in her twenties. Looking back, the signs had always been there: heavy periods (also known as menorrhagia), frequent nosebleeds that required cauterization, and unexplained bruising throughout her childhood.

Aware of her diagnosis, her mother made it a priority to test all of her children as soon as possible. As a result, Michelle was diagnosed just a few months after birth, so she knows what it means to grow up with VWD.  

From an early age, Michelle witnessed her mother’s struggle to secure proper care and treatment for her and her sisters. At one point, the family was offered just a single bottle of treatment to share among four people (all with VWD ). The justification? “They’re mild cases, they don’t need much.” But her mother knew better. Sharing one bottle was neither hygienic nor safe.

When Michelle was growing up, she and her sisters attended health fairs with their mother, who explained how bleeding disorders presented themselves. This work was so important that the National Bleeding Disorders Foundation (NBDF) created an initiative called “Project Red Flag”, in which her mom participated as one of the founding members.

Back then, those fairs and visits to malls and community centers were anything but exciting for young Michelle. But now she understands the impact of this work. The advocacy her mom carried out for her daughters and other women with bleeding disorders is what truly ignited Michelle’s passion to become involved in her community.

Her official advocacy journey began at just 16, when she got involved with her local chapter’s advocacy board. By the time she was 18, she was an active member of the National Bleeding Disorders Foundation (NBDF) through the National Youth Leadership Institute (NYLI). In 2015, she was awarded the Susan Skinner Memorial Fund Scholarship, presented by the World Federation of Hemophilia (WFH). 

In addition to her advocacy work, Michelle also attended hemophilia camps in Michigan. Her mom made it a priority for her and her sisters to be surrounded by other kids her age with bleeding disorders. These experiences made her understand that “just because it’s your normal, doesn’t mean it’s normal.”

A long road to the right treatment

Even after a lifetime as a patient and years of work as an international advocate, Michelle still struggled to find the appropriate treatment for her. It took her 32 years of ups and downs to finally come to one that truly suited her needs.

Fortunately, she discovered Microhealth, a specialized app for managing bleeding disorders, which helped her find a treatment that works for her. After realizing she needed a way to show her hematologist the severity of her symptoms, she began logging her events in the app. Whether it was a new bruise or a nosebleed (especially common during the winter months for those with Von Willebrand Disease), she saved each one in her account. 

With the Microhealth app, Michelle was able to add any details she felt were important in the notes section of her logs. For example, she included the bleed duration and photos of the discarded tissues to show them to her hematologist later.

Heavy bleeding during her periods is another symptom she knows too well. From an early age, she had to get hormonal treatment to manage her periods. Over the years, she tried different contraceptive methods, but they were only a temporary solution. In her search for a lasting solution, she began logging this information in her Microhealth app account as well.

Every time she logged a bleed related to her period, she included details like the number of overnight pads she used to show her hematologist that her current treatment wasn’t working. Over the course of five years, she diligently tracked every event. Finally, her persistence paid off when her hematologist noticed that her bruising wasn’t normal. It was then that she was able to access factory replacement therapy in January 2025.

Michelle’s most recent win was getting approved for genetic testing. With this test, she and her healthcare team will learn the specific genetic changes (mutation) in her Von Willebrand gene. And how did she reach this major milestone? Through her consistent use of the Microhealth app.

Through her logs, she showed to her hematologist and insurance company the need for genetic testing. This test will help identify her specific Von Willebrand variant, type, possible subtype, and whether she has a gene mutation. 

Microhealth: an ally in Michelle’s health journey

Michelle doesn’t just see the value of the Microhealth app for herself; she also sees its potential for those around her. Coming from a family affected by Von Willebrand Disease, she has witnessed how the condition can manifest differently in each person. Take her mom, for example, who sought a second opinion after a bruise lingered on her ankle for weeks.

Naturally, Michelle was shocked by it and encouraged her mom to use the Microhealth app to keep an accurate log. Even though her mother’s hematologist assured her that she wasn’t bleeding anymore based on her Von Willebrand levels, Michelle knew that there was something missing. She understands that keeping a detailed record of your bleeds can make a difference in your health journey. 

By regularly logging into the Microhealth app, patients can demonstrate the effectiveness of their treatment plan and identify if any adjustments are needed. This helps patients like Michelle and her mother to receive the care they deserve.

Life before Microhealth

Before using the Microhealth app, Michelle relied on a photo app to save pictures. The day before her visit to her HTC, she would add those images to another folder so she could easily show them to her hematologist. Although it was effective, this method was time-consuming and inconvenient.

By using the Microhealth app together with her hematologist, Michelle’s medical appointments have become smoother. Her healthcare provider can simply click on the bleed icon (the red spot) to view the photo attached and better understand the frequency and severity of her events. 

Michelle encourages everyone to log every event in their app to show them to their hematologist later. Even if your Care Team says it’s nothing, having a detailed record helps you, as a patient, better understand your own symptoms.

Whenever she meets someone new from the bleeding disorders community, Michelle makes sure to tell them about Microhealth. While many already know the app, she enjoys sharing the latest features she’s confident will make their lives easier.

The future for the bleeding disorders community

As a Von Willebrand patient, Michelle is pleased to see that there are currently several treatments in clinical trials focusing on different aspects of the condition. These also include those focusing on hemophilia. Thankfully, the community has more options than ever before, and she hopes this trend will continue. 

Patients with ultra-rare bleeding disorders like factor V, factor VII, or factor XIII deficiencies are finally receiving attention through current clinical trials and research projects focusing on their needs. Hopefully, these efforts will result in new treatment options, rather than relying on old solutions they’ve had to use.

Her general hope for the world is that every patient can access factor and receive a treatment that suits their condition and symptoms. In Michelle’s opinion, the Microhealth app can be a key player in achieving that vision.

Finally, she thinks it’s amazing that patients agree to share their anonymized and deidentified data for research. By doing so, it will help them identify unmet needs regarding treatment and inform the direction of future research. Overall, Michelle is very excited to see how Microhealth’s features impact the bleeding disorders community.

About Michelle Cecil

Michelle is deeply passionate about supporting individuals living with chronic health conditions. She brings extensive experience working with the Crohn’s/Colitis and diabetes communities, alongside many years of dedication to the bleeding disorders community, informed by her own journey living with von Willebrand Disease (VWD). Michelle also spent six years in higher education, serving as a hall director and programming advisor at various universities.

She holds a Master of Public Administration (MPA) from Oakland University in Michigan and a Bachelor of Arts (BA) in Communication, with concentrations in Rhetoric/Public Advocacy and Organizational Communication, from the University of Wisconsin Oshkosh. In her free time, Michelle enjoys gardening and cherishes moments with her partner and their three cats.