Discussing platelet disorders with advocate Jeanette Jones

Here's why inclusion matters in the bleeding disorders community

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for women in the bleeding disorders community.

To mark Bleeding Disorders Awareness Month this March, I recently had a series of conversations with her via Zoom and email to delve deeper into her experience with a bleeding disorder. Excerpts from our discussions follow:

JL: What bleeding disorder do you have?

JJ: It’s in the platelet storage pool category [and called] platelet dense — or delta — granular deficiency. It’s like any other bleeding disorder for the most part, with more mucosal bleeding than others, at least for my family and me. My son was diagnosed in 2023, and my daughter is going through referrals and testing now.

Can you tell me more about your experience living with it?

It was confusing for most of my early life without a diagnosis. I was experiencing bleeding and had no idea it was related to a bleeding disorder. I’d never even heard of that before. I was finally diagnosed in 2016 with antiphospholipid syndrome (APS) because I had experienced multiple miscarriages.

After the first diagnosis of APS, some of my bleeding symptoms were explained, but not the rest. Another family member’s test results led my doctors to investigate even further, and platelet deficiency was officially identified in 2021.

Experiencing multiple miscarriages caused great damage to my mental health. When I was finally able to carry to full term, both deliveries were scary, and I experienced preeclampsia as a result, along with hemorrhaging postpartum. I dealt with heavy menstrual bleeding with no support until my 30s, which is why I’m so passionate about helping others get treatment for it now.

How does it impact your daily life and activities?

Bleeding often disrupts my life and plans. Nosebleeds, heavy menstruation, and caregiving can make life more stressful and frustrating.

In an emergency, we make use of our local ER. Then we spend a lot of time educating the providers who are available. With kids, it’s important for me to stay calm so that they will, too. Three years ago, my son busted his head open and had to get three staples. It was a horrifying experience, and I wish I had had better control over my emotions because I’m sure my reaction scared him more.

Are any specific treatments or therapies effective for you?

Since people with this type of deficiency don’t have a replacement product available, emergencies are a bit more challenging. I rely on other aids like antifibrinolytics [medicines that promote blood clotting], such as BleedStop powder, hydrocolloid bandages, nose plugs, etc. We use saline gel to keep our noses moist.

I wish there was more funding for platelet research to develop replacement therapies. The sad truth is that drug development is driven by profit. A little more than 3,600 people are similar to me, which is not an attractive number for profit margins. It’s a frustrating and sad reality.

How do you navigate medical care and doctor appointments?

We make a list of questions or concerns ahead of time to make sure we cover everything we need to. We wear comfortable clothing for movement assessments and bring snacks and drinks in anticipation of blood tests. We pack comfort items that help with anxiety and pain. I send bleeding records ahead of time, if possible, and then bring them with me as well. I take notes when needed. There is always a lot of information, so taking notes can help to remember it all.

What advice would you give to someone newly diagnosed with a platelet disorder?

Learn everything you can about your disorder and as much as you can about the others. You need to become the expert of you and be prepared to educate others and advocate. Get involved! The community is the best resource for you. They are living it and know exactly what you are going through. You will need a support system, and they need you, too.

Is there anything else you would like people to know?

There is a growing community of platelet people who are eager to share their experiences with you. They are also desperate for better care and treatment options. When you talk about bleeding disorders and say only hemophilia, we notice. Inclusion matters, and we are thankful for the massive strides at the national level. Platelet people have been supporting the community’s majority since the beginning. We need your support, too.