How my journey began

Hi, I’m Dawn Reiss. I’m a Chicago journalist, a mom and a former Division I collegiate rower. I know the difference between “good pain” and “bad pain.”

I’m also an avid swimmer who has competed in triathlons and spent my youth working as a lifeguard and swim instructor.

During the summer of 2016, I got into the pool and for the first time in my life, I couldn’t swim a single lap or do a flip turn. My legs, feet and ankles were heavy and so swollen I could barely move.

I knew something wasn’t right.

Like so many other people who are eventually diagnosed with lymphedema, the doctor I initially saw discounted my concerns. She told me to eat less and work out more. I knew that wasn’t the problem.

The doctor prescribed diuretics, which I later learned are one of the worst things for people with lymphedema, because it does nothing to help drain the protein-rich lymph fluid and can exacerbate the problem.

For the next few months, I was treated like a guinea pig. I saw a rotation of specialists who ruled out other possible problems. Eventually, I switched doctors. I was diagnosed with lymphedema when I was five months pregnant.

I had to make a difficult choice during my pregnancy and opted to begin treatment with an outpatient occupational lymphedema therapist at a hospital. My ob-gyn originally thought I should wait to begin treatment until after I had delivered my son.

After reading a blog post written by a mother, I learned about the importance of starting Manual Lymphatic Drainage (MLD) and taking a proactive, aggressive approach to compression and bandaging while pregnant.

I later wrote an article about my journey in the Chicago Tribune that was picked up by other news outlets across the United States. Readers from all over began emailing me, asking me for advice and suggestions. I was asked by Dr. David W. Chang to present at a symposium held at the University of Chicago.

I’m not a medical expert, this website and blog is not intended to replace consultation with a qualified medical professional. But I also realized there is a real need for people who are living with lymphedema to connect with other people who are going through something similar. This disease can be debilitating. It is progressive but it can feel like one is invisible until having lymphedema becomes so obvious (thanks to compression bandages, velcro wraps or body parts with dramatic swelling) that everyone gawks, publically stares or makes comments about your body, like it is a billboard on display.

My hope is sharing stories about people living with lymphedema and people who are trying to help them, will help bring awareness. So much still isn’t understood about lymphedema by the medical community and the general public.

It’s important for everyone who is living with lymphedema to know they aren’t alone. Our journeys are all different. But we are in this together.

Being a former sports reporter, I’ve always liked the idea of gathering together to strategize, motivate and celebrate.

Let’s huddle up and share.

Welcome to Lymphie Huddle.