It’s hard to ignore the symptoms of cutaneous T-cell lymphoma (CTCL) on your skin, but what you see isn’t always what it seems. Knowing how and where CTCL can affect your body is an important step to managing it.
Let’s begin by testing your knowledge to uncover what you may be missing.
CTCL is a cancer that only affects my skin.
While CTCL may appear on your skin and be mistakenly thought of as "benign," the fact remains that CTCL is still a serious cancer that can spread to the blood, lymph nodes, and organs.
I only have to see a dermatologist to manage my CTCL.
Because CTCL is a serious disease that may affect more than just the skin, it’s important to work closely with a team of experts across different specialties at a treatment center to carefully monitor your health.
Being diagnosed with early-stage mycosis fungoides means my symptoms will never get worse.
Many people diagnosed with mycosis fungoides will not experience disease progression or worsening, but some people with this type of CTCL have had their disease worsen over time.
Seeing a doctor isn’t necessary unless my skin is really bothering me.
Even if your CTCL is inactive for long periods of time, it can spread on your skin or to other parts of your body—and you may not feel or even notice it. See your care team regularly to track your CTCL.
If treatments aren’t working well for me, there’s not much my doctor can do.
If a therapy isn’t doing enough to help or is causing intolerable side effects, speak up. Talk to your doctor to find a solution that works for you.
CTCL is predictable.
CTCL can spread to other parts of your body, and it can be hard to predict how or if it will progress.
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Though CTCL is rare, you are not alone. Each year in the United States, CTCL is diagnosed in about 3,000 people.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.
Approximately 16,000 to 20,000 people are estimated to have CTCL in the United States.
Like many rare diseases, CTCL is commonly misdiagnosed. Easily confused with psoriasis or eczema, it can sometimes take a while before a correct diagnosis is reached—and the path to diagnosis often includes seeing many different physicians.
But remember, you are not alone. Organizations exist to connect you with the information you may need, as well as opportunities to meet other people diagnosed with CTCL.
Learn more by visiting the following resources:
Observed on the last day of February each year, the rare disease community joins together to raise awareness for many rare diseases like CTCL. But raising awareness shouldn't be limited to 1 day-you can raise awareness year round.