This is how she came to understand her mom's invisible disease.
As the Executive Director of Lipodystrophy United, Kate focuses on empowering communities through authentic connection and collaboration across all stakeholders in the lipodystrophy field, partnering with the community, industry and global foundations to promote accurate diagnoses, effective treatments, and progress toward a cure for lipodystrophy. Kate believes that people living with lipodystrophy are the true experts and should be central to every decision and initiative.
Transcript
It was October 13th. It was a gray, overcast day in Berlin around 2 p.m. I think. I was still jet lagged and the rainy skyline looked extra blurry through my wet glasses. I was rushed and late to a coffee shop where I was supposed to meet Sabine, one of my mom's friends.
They met because Sabine lived lives with the same rare disease as my mom, and the two of them have become friends through their advocacy work. A few weeks earlier, I had booked a one way ticket to Germany, wanting to start my own life and free myself of what held me back. I chose Germany because a dear friend was studying abroad and I knew I had a place to land. Something told me that I had to be there in that small brick coffee shop with a gold lined door.
But when I walked in, I was still stunned. I swear for a second I thought my mom was sitting at one of the tables. I gently wiped the steam and rain off of my foggy glasses and looked again.
For most of my childhood, my mom's illness was not understood by doctors and in consequence, everyone in our family did not believe it either, including me. Even after she was diagnosed, when I was around six years old, I watched my mom inject her medications every day.
I heard her talk about pain, fatigue, and hunger, but I couldn't understand how that was possible when she was so muscular and healthy looking.
It also seemed like her symptoms were things that I experienced and everyone experienced. We all feel pain, fatigue, and hunger, so it didn't make sense to me. Um, I heard people ask her all the time in public if she was a bodybuilder.
Other moms at school would say that she's so lucky to be fit like that. Instead of being seen as someone living with a rare disease. People saw my mom as an attention seeker who looked pretty fit. My mom's disease sat at the center of so much of the confusion, anger, and disbelief in my parents divorce.
Something impossible for me to understand as a child watching her parents fight. It felt like acknowledging her disease meant choosing a side. And I couldn't bring myself to do that.
I didn't want to stand with either of my parents, and I just wanted to be the neutral one. I spent my formative years after the divorce, caring for my younger sister, making her dinner, driving her to extracurricular activities, and helping her navigate everyday life.
In the midst of my mom's illness and the separation, I had to grow up very quickly and become the most consistent parental figure that my sister had. In 2012, a couple years after my mom was diagnosed with her disease, my mom founded Lipodystrophy United, which is a patient advocacy organization, because she wanted people to understand her disease so that no one else would have to endure the long and emotionally painful diagnostic journey that she had experienced.
Looking back now, I also realized that she was desperate to be understood because even her family didn't understand her at the time. I completely resented her doing this work. I felt like she didn't have the energy to be there for us as a mom in ways that I needed her to be.
Yet she was pouring what little energy she had into a foundation that wasn't even paying her. After years of financial hardship, I couldn't understand why she would devote herself to something that seemed to be asking so much of our family.
Years later, those feelings still followed me all the way to a small cafe in Berlin. No, it was not my mom that I was seeing. It was this woman's head on my mom mom's body. I had never seen another person with my mom's disease before. It was absolutely mind boggling to see Sabine. Muscular arms and legs, fuller face and Truncal area. Prominent veins. The body shape that I had grown up seeing, grown up, seeing every day but had never seen reflected in another person. Yeah, this disease is real. I thought to myself. A pang of guilt hit me hard.
After college, I moved back home to an intense reality. My sister was in a mental health crisis in and out of the hospital, and my mom was continuing to navigate a rare disease that I didn't want to deal with. I didn't want that responsibility or to build my life around illness after escaping it the first time. When I moved to college, I didn't want to be needed in that way.
The constant fear emergency phone calls, medical uncertainty, feeling that every time I tried to step into my own future, I was pulled back into someone else's crisis. I remember checking find my constantly, um, to make sure that my mom and sister were in the places they were supposed to and that was just so scary to always worry that they might be having an emergency.
When I thought about leaving home to travel because it all seemed too much for me, my mom told me that I was selfish for wanting to leave my sister and selfish for wanting to leave her. But inside, every fiber of my being was screaming for individuality, the chance to discover even a small piece of my own identity, my agency and my mental health weren't on anyone's mind because there were bigger things to deal with. I had to leave. Just to hear my own thoughts. To finally feel in touch with how I was doing.
Booking a one way ticket to Berlin was my desperate attempt to escape, but I was still not free from the life that I had left behind. This coffee meeting was a reminder that no matter how far I traveled, I remained tethered to the responsibilities that came with my mom's illness.
I hadn't asked for my mom to be sick or for my sister to struggle with mental illness. I hadn't asked for most of my other family members to be absent during every crisis, leaving everything to fall on me. Yet I felt like somehow it always did. The need to be understood radiated off of Sabine the same way that it did my mom. Just like my mom often did after speaking to someone new, she talked a lot about her disease opening up really quickly about how it impacted her day to day life.
It seemed like like my mom. She was really hoping to be understood. She spoke openly about the constant pain and fatigue she lived with, especially. I knew the definition of their disease well. Lipodystrophy is a rare disease characterized by an abnormal distribution of fat throughout the body, often leading to progressive metabolic disease and affecting many systems.
Mental health challenges, body dysmorphia, fatigue, full body pain, uncontrollable hunger. My mom had said all of the same things about her experience in that conversation. Somehow, the puzzle pieces finally clicked.
For the first time, I wasn't looking at my mom's disease through the lens of my own pain and resentment. I was seeing lipodystrophy for what it truly was. And in seeing Sabine, I finally saw my mom. Looking back, I couldn't tell you exactly what we talked about. The words themselves have faded. What is never left is the feeling of sitting across from someone who was in so many ways, another version of my mom.
As Sabine spoke, memories I hadn't thought about in years resurfaced with entirely new meaning. I remember the day that my mom began metreleptin therapy through a compassionate use program after her first injection.
She burst into tears. This is what it feels like to be full, she said. In that moment, I didn't really understand what that meant for her. But talking to Sabine about her hunger, I realized that after a lifetime of never experiencing fullness, of living with relentless hunger and the constant panic of never having enough food, she had for the first time found relief.
Something that I get to feel Every day. As a child, I had witnessed that moment and it was painful to see her cry. But I still felt angry that she couldn't be the mom I hoped she would be. We still couldn't do many things together as a family, and I still carried a lot of responsibility. At the time, I didn't really see her treatment changing anything for me, so I barely thought about it.
While talking to Sabine about all of this, a question settled heavily on my chest. How had it taken me so long to understand the true weight of what my mom had been carrying all along?
For the next few months, I wandered around Europe, staying in cheap hostels, living on grocery store bread, something a lipodystrophy. Um. A person living with lipodystrophy could not do without sending their metabolic numbers into complete chaos and walking everywhere to stretch my budget for as long as I could. It was really nice.
It was kind of the life, but it was a lot of work because I was doing a lot of self exploration, and in trying to understand myself, I came to a realization I had possessed agency all along, not the power to save everyone I loved like I thought I had and what I couldn't do that I, I felt really down on myself, but the ability to care for myself while standing beside them with intention rather than obligation.
I wondered if that could be possible, if I could somehow balance myself and the love I have for my family. For years I believed that it was very black and white I. If I could just get far enough away, I could outrun my family's pain or I could stay and lose myself.
But I discovered that love maybe doesn't require full self abandonment. I had spent years trying to hold everyone together while never telling anyone what I was carrying myself. That silence became resentment, and it made it impossible to truly see the people I loved in all their nuanced ways.
What had been missing wasn't more sacrifice. It was vulnerability and forgiveness. Of course, of myself and my mom, which only came with understanding my own needs. It was then that I decided that I. I think I want to continue my mom's legacy, not because anyone expected me to do that, but I genuinely wanted to try.
It was the first major decision I felt like I could be making entirely for myself, one rooted in my own values rather than my sense of obligation.
Meeting Sabine had really stuck with me. I wanted to build a future where people like Sabine and my mom, of course, could access life changing treatments and live longer, healthier lives.
Advocacy was no longer something I did out of duty for my family, but I finally believed in its power because one small interaction with one woman had completely transformed the way I understood my mom's disease. If my perspective could change so profoundly, I wondered how many other caregivers and family members might experience the same shift if they truly understood what their loved ones were living with, and if they connected with the broader lipodystrophy community.
I didn't want another family to grow apart because lipodystrophy was so misunderstood. It also became a personal challenge. Could I devote myself to other people without losing myself in the process?
Could I love my family deeply without making their lives My entire identity. I hoped this work would allow me to build relationships rooted in my personal growth rather than responsibility, and that I could still be serving my mom and a community I now really care about.
Reflecting on who I was outside of my family responsibilities, I realized that I would never be untethered from the fact that my mom has a rare disease. It shaped our relationship. It's shaped my life, and it really almost always will.
One day, my mom will inevitably die from this disease. She's lived far beyond what a lot of people do, so who knows when? But when the day comes, I want to know that I did everything I could to help her access treatment and to help the community. I was still traveling, but I felt like I was counting the days until the. Until I could come home and start. Though I had absolutely no idea what was in store or what I would be doing. I wanted to meet more people like my mom and Sabine and try to unite, to drive real change in whatever way I could.
And that's what I've been doing for the past two and a half years. And importantly, I've met so many caregivers who have had the same experience that I had, not believing their family member was really sick or just not understanding what was happening and not knowing how to help. I lead support groups to help people understand, validate fears and show them the power of coming together.
And I support a lot of people in the community who don't have caregivers who understand them. It's really been the most rewarding journey of my life. Probably more rewarding than solo travel because I feel like I have so much purpose and I'm giving back to the world.
I will continue advocating, hopefully until every person living with lipodystrophy has access to effective treatment, and every family has the opportunity to understand what this disease truly asks of the people who live with it. I'm a better caregiver now, I would like to think. I'm flawed and I'm still learning, but I will no longer-But I no longer advocate because I feel responsible for saving the people I love.
I do this work because I finally understand my mom and I understand this community, and I believe that understanding is the first step and has the power to change families, change medicine, and ultimately change lives.
Thank you.