Castleman disease: “I am living proof that everything depends on your mindset”

Published Dec 7, 2021 • By Charlotte Avril

Shumekia, who has idiopathic multicentric Castleman disease and is a member of the CDCN, tells us about her battle against the disease, her daily life, and how faith has helped her to overcome these challenges.

Read her story below! 

Castleman disease: “I am living proof that everything depends on your mindset”

Hello Shumekia, thank you for sharing your story.

Can you tell us a little bit about yourself and your diagnosis? 

My name is Shumekia Marie, and I am fighting idiopathic multicentric Castleman disease. I'm 36, a mother of 3, and I was told in 2013 that I wouldn't live to 35. I have had 14 major surgeries in 3 years, to remove the lymph nodes that were affected by the disease.

What is the impact of the disease on your everyday life?

I work full-time, and I have chemotherapy in the evenings after work. This has been one of the biggest challenges of my life. My body is riddled with pain every day, and the moments of tiredness and weariness caused by the disease can be overwhelming. But I keep going no matter what.

Have you had any support in your fight against Castleman disease?  

My children have saved my life. Without them, I would have given up. But because I am all they have, I decided the day I was diagnosed in 2013, that I was going to fight. I have been fighting ever since and every day I pray for a cure. I also pray that I can be the person to show all those who are living with disease or any other, that faith makes everything possible. I am a living proof that everything depends on your mindset.

Where do you find the strength to keep fighting? 

My struggle, and the strength with which I'm facing the disease, also lies in the way I manage the outcomes of each appointment and in the way I endure chemotherapy. My personal mission is to be the first patient diagnosed with Castleman disease to beat it - and to stay in remission. "My afflictions are not to be the death of me but to get my attention."

Can you tell us more about what the CDCN and Dr. David Fajgenbaum have done for you?  

The CDCN has helped me meet people like myself and let me know that I am not alone, that I'm not the only one with the "I don't know what's wrong with you" disease. I no longer feel alone thanks to all the summits and the community filled with people who are battling like me or even on another level. I am forever grateful to Dr. David and his team. I needed this. Thank you.

Is there something you would like to share with other Carenity members living with Castleman disease? 

If there was something I had to say to every member of the community to help them fight against this disease, it would be: "Don't let the disease challenge you, challenge it yourself!"

Many thanks to Shumekia for sharing her story! 

Was this testimonial helpful to you? 
Give it a "like" and share your thoughts and questions with the community in the comments below! 
Take care!

Testimonial adapted from the CDCN

avatar Charlotte Avril

Author: Charlotte Avril, Pharmacist, Data Scientist

Charlotte holds a PharmD and a master's degree in Pharmaceutical and Biotechnology Management from ESCP Business School in Paris. She has a strong interest in e-health, health tech, rare diseases, and... >> Learn more


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