You Are Not Alone

COVID-19 has restricted the way we are able to interact with family and friends. Keeping each other safe is our priority, and we’ve had to find creative ways to stay in touch with our loved ones. Living with Lymphedema is difficult, quarantine life makes it even more so. Emails, phone calls, text messages, video conferences have allowed us to continue to be that support we all need. I reached out to my friend Nadyza Muhummad in Mississippi to discuss Lymphedema. And there’s one thing I took away from our email exchange: You are not alone.

What age were you when you were diagnosed with Lymphedema?

I was 41 years old when I was diagnosed with left leg Lymphedema.

Is your Lymphedema considered Primary or Secondary?

My Lymphedema is secondary.

What is your occupation?

My occupation is an Occupational Therapist and a Certified Lymphedema Therapist. I work in an outpatient hospital setting.

Advocacy Training Committee

In August, I was nominated to the Advocacy Training Committee for the Lymphedema Treatment Act and it has been a great experience. I’m learning about the inner workings of operating an advocacy organization.

Outside of yourself, how many other Lymphedema Therapists are located near you?

Outside of myself, there are no Certified Lymphedema Therapists within 60 miles.

How has your role as a Lymphedema Therapist/ Patient been helpful in taking care and maintaining your Lymphedema?

My role as a Certified Lymphedema Therapist is helpful in the treatment of my own Lymphedema. It has given me skilled training knowledge and insight regarding the causation, science, and the anatomy associated with Lymphedema. As a Therapist, I have first-hand access to the latest innovations in the field, new treatment methods, and techniques.

What is your biggest concern when dealing with your Lymphedema patients?

My biggest concern when dealing with my Lymphedema patients is striving to take care of them wholistically. To not just treat the limb or the condition, but to treat the whole person. I make an effort to educate them about good skincare, the importance of good nutrition, the correct way to bandage and wear compression, and just how essential exercise is to proper management of Lymphedema. I also address their mental health needs whether the needs are associated with depression, anxiety, etc. I provide them with the means and resources to get counseling, get assessed for medication, and potential medical needs. I also address their ADL (activities of daily living) needs, their transportation, and household accessibility needs. My training as an Occupational Therapist provides me with specialized skills to address these issues. As a compassionate human being, it is so important to me to touch on all of these aspects of care and to give my patients the best chance for a positive outcome.

How has your role as an advocate been helpful mentally for your Lymphedema?

My role as a Lymphedema advocate has been helpful to me mentally concerning my own lymphedema because it empowers me. Advocacy makes me feel like I can actually affect change and help to make managing this chronic lifelong condition better for myself and others.

What advice would you give to Lymphedema Patients?

The advice I would give Lymphedema Patients is to not lose hope. Be strong and consistent with their compression, exercise, and self-care. Find qualified therapists in their area to help them manage their Lymphedema. I would encourage them to join a support group and stay connected with others because as isolated as they may feel they are not alone.