My lupus diagnosis was definitely not an easy one. It took me almost 8 years to finally have a confirmed diagnosis.
- What is your name?
Emmerson Winnie - Where are you from?
Saddle Brook, New Jersey - Please share your story of being diagnosed with both Lupus and ITP. How did it all begin for you?
In December of 2017, my sister was diagnosed with a benign brain tumor and had a craniotomy short after. After her surgery, my mother thought it was best for us all to see a neurologist just to be extra safe. My neurologist conducted routine blood work and reported that my blood platelets were 26,000 and directed me to a hematologist immediately. I still did not think much of this, since I did not know the importance of platelets. Once my hematologist checked my bloodwork from past E.R visits, we found out that I had ITP for almost an entire year previous to my diagnosis. This is when I started to realize the dangers of low blood platelets, since I had been playing numerous contact sports during this time.
My lupus diagnosis was definitely not an easy one. It took me almost 8 years to finally have a confirmed diagnosis. Ever since I was young, my doctors and I knew something was unusual, since I was in constant pain and had weak joints, but my labs always bounced between normal and abnormal. The label for my pain was constantly bouncing between tendonitis, rheumatoid arthritis, and an undifferentiated connective tissue disease. I had the majority of the lupus symptoms, but my bloodwork was too unstable for a diagnosis up until a few months ago. - What do you wish others knew about living with both Lupus and ITP, especially those who may not fully understand these conditions?
Pain is not visible
Living with both ITP and Lupus can feel like a constant balancing act. I wish others understood that it is not just about decreasing and managing symptoms; it's about being in a constant state of uncertainty and confusion. Some days I may feel fine, but other days, I am struggling with insane fatigue, joint pain, and bruising, that make it hard to predict when and where it will happen.
When people think of Lupus, they either think of a butterfly rash, or Selena Gomez. Personally, I think Selena Gomez does an amazing job at spreading awareness for Lupus, but others still may not understand it in a deeper meaning. Lupus affects my organs, joints and immune system, which can be a difficult conversation that many are not willing to have. With ITP, I have to be cautious of my platelet number at all times. If my platelets are below 75,000, there are many things that I shouldn’t do, like riding roller coasters. There is a lot of mental exhaustion associated with ITP. Sometimes I want to be carefree and play sports, or ride rollercoasters, but I am stopped due to low platelets. I wish others understood how exhausting and upsetting it is to have to sit on the sidelines sometimes.
I also wish people knew that my “good days” are not always the same. On a “good day,” I may still feel uncomfortable or in pain, but I am still grateful for being able to move around more than I usually can. Even if I seem fine on the outside, there are numerous issues that I am internally managing.
Understanding and learning about these conditions takes time and patience. I hope that people see that I, as well as other Lupus and ITP patients, are doing the best we can, trying to live as fully as possible, despite the constant challenges. - What have been some of the hardest obstacles you've faced while living with Lupus and ITP? How have you overcome them?
Living with both Lupus and ITP, I have faced many difficult obstacles. One of the largest challenges is the exhaustion that comes with both conditions. Lupus causes extreme fatigue at times, and with ITP, I have to be super cautious, which can make simple tasks feel overwhelming sometimes. There are many days where I just can’t get out of bed, or when I'm too exhausted to do anything. This often becomes very frustrating, especially when the people around me might not understand why I cannot just "push through it."
Another difficult obstacle is managing flare-ups. Lupus flares can cause severe pain in my joints. With my luck, these Lupus flare ups tend to come at the worst possible time. While I was in Dental Hygiene school, I would sometimes get flare ups while I had a patient during clinic hours. I was so scared of getting a poor grade, or getting in trouble that I would push through the pain and continue my patient appointment. This was one of the hardest periods of my life, especially because I felt like no one would understand what I was going through.
Trying to find a balance in medication has also been a hard task. There is no cure for Lupus, but it can be managed through medication and lifestyle changes. At this point in my life, I feel as if I have tried every medication possible, from pills to injections. It is extremely frustrating to have full faith in a medication, just to have it not work for you. It feels like false hope over and over again.
In terms of how I've overcome these challenges, I have been trying to learn to listen to my body. I have had to accept that I can not always do everything that I want to do, and I have to take breaks when my body needs it. I have also become very proactive with my treatments, writing down my symptoms, communicating with my doctors, and advocating for myself.
Managing stress is another large factor- since stress can make both conditions worse. I have been trying to learn new ways to de-stress, whether it's from going on walks, or reading on my kindle. It is definitely not easy, but I have learned that resilience comes from taking things slow, and one step at a time. It's also about acknowledging the challenges, but not letting them define me. - Is there a moment or experience in your journey that stands out as a source of strength or inspiration?
One moment that really stands out as a source of strength and inspiration for me was when I organized an ITP awareness walk through the PDSA. At the time, I was feeling overwhelmed by both my ITP and undiagnosed Lupus symptoms, and it seemed like the perfect way to channel some of that frustration into something positive and bright. I also used this as an opportunity to complete my Girl Scout Gold Award.
The day of the walk, seeing so many people come together- friends, family, ITP patients, and even strangers- walking for a cause that directly impacts my life, was incredibly moving and beautiful. There was something so beautiful about seeing the support and knowing that the work I was doing was helping to raise awareness and educate others about ITP. It also reminded me that I am not alone in this, even though I have often felt isolated. Both Lupus and ITP are invisible illnesses, but that event made me feel seen.
What made it even more special was hearing the stories from others who were living with ITP or had loved ones with it. Their courage gave me a renewed sense of purpose and reminded me that we are all in this together, fighting these conditions with strength. The ITP awareness walk reminded me that even on my toughest of days, I have the power to make a difference- not just for myself, but for the entire ITP and Lupus community. - What role has PDSA played in your healthy journey?
When I was first diagnosed with ITP at the age of 14, I had no idea what was going to happen. I was just starting high school and I had no idea what thrombocytopenia was or why I suddenly had it. No one knew where it came from, if it was genetic, or from an infection, and everyone treated me like I was a fragile object. I was in a continuous loop of feeling alone, and I had no one to relate to, that is, until I found the PDSA. I found the PDSA through reading patient stories online. The PDSA made me feel supported, and not so alone in the beginning of my diagnosis. - Share something unique about you and/or one of your favorite hobbies.
One unique thing about me is that I am passionate about gardening and plants. It started as a small hobby, but now it has turned into something that brings me so much joy and peace. Taking care of my small plants gives me a sense of control that I sometimes feel like I lack in other areas of my life. - What can you be found doing on the weekends?
On the weekends, I can be found reading or playing with my three dogs! If the weather is warm, you can typically find me outside or in the pool. - What is one thing you’d share with a newly diagnosed patient? This can be a tip, important reminder, inspirational quote, or something else you feel compelled to share.
As someone with ITP and Lupus, I’d tell a newly diagnosed patient to be patient and kind to yourself during this journey. It can feel overwhelming and consuming, but it’s important to remember that you are not alone—there’s a whole community out there, and with the right support, you can manage it. Don’t hesitate to ask any questions, seek advice from support groups, and take one day at a time.
"You are stronger than you know," because there will be tough days, but you have the resilience to keep moving forward. Prioritize your health, trust your doctors, and give yourself grace as you navigate this new reality.
Interested in sharing your journey with ITP? Submit your ITP story here. (Full names and contact information will not be shared).