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Q-1) Could you describe your story?
A-1) I am a middle-aged Black woman who has Lymphedema. It is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system. Lymphatic is a part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.
Lymphedema results from the inability of the lymphatic system. It is restricted to performing its basic function of removal of water and protein from the tissues.
This inability can be caused by developmental abnormalities of the lymphatic system called primary lymphedema, or by damage to the lymphatic system such as the removal or radiation of lymph nodes in cancer surgery or infection of the lymphatic system, which is called secondary lymphedema.
Lymphedema can be present in the extremities, head, neck, trunk, or external genitalia. The accumulation of protein and water in the tissues may come on gradually or suddenly. This high protein content can lead to complications such as hardening of the tissues, infections, and increased volume, especially if the lymphedema is untreated or mistreated.
Lymphedema is most commonly diagnosed after cancer treatments. The surgical removal of lymph nodes. Even the use of radiation therapy are common treatment to prevent the cancer from spreading to other areas of the body.
Yet, there are several other causes of lymphedema such as post-surgical, and post-trauma. Also, vein insufficiency, and hereditary.
Q-2) How has the disease changed your life, in terms of diet, work, and other activities?
A-2) I was born with this. This has changed my life because of the swelling in my body. It does not allow me to wear certain clothes. Also, I am unable to sit for a long period.
I dealt with mental health issues because of the depression that it caused me.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group, depending on government initiatives, or reading about your disease.
A-3) Perform a range of motion exercises. Even massage, skincare, and exercises can stimulate the lymphatic system. Get education on techniques.
I am a member of an advocacy group Lymphedema and Me that meets monthly.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) My treatment options are easy to access. I see the staff at VCU twice a week for treatments. The cost is not expensive and there is no permanent cure.
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) This did not impact my family finances, I have insurance.
Q-6) Are you trying out any alternative healing techniques?
A-6) I have tried several alternative healing techniques.
To name a few: a pump, exercise, medication, and physical therapy.
Q-7) How did you and your family deal with your changed circumstances?
A-7) It is ongoing.
Q-8) Please share one aspect of your journey that touched you most.
A-8) When my legs are swollen it is hard to fit properly in pants.
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9) Prayer; my family
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10) Make sure you get your treatment.
The views expressed in this article are the author’s own and do not represent any kind of medical advice.