Need Support for Carcinoid Syndrome? We Have a Link for That!

Carcinoid syndrome occurs when a carcinoid tumor secretes certain chemicals into the blood stream. While rare, most of these tumors are contained in the gastrointestinal tract.

Symptoms include, but aren’t limited to:

  • Skin flushing
  • Facial skin lesions
  • Diarrhea
  • Difficulty breathing
  • Rapid heartbeat

As with most rare diseases, it can take years to receive a correct diagnoses, which is why knowing the symptoms, writing them down, and bringing the list to your doctor, can be very helpful.

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Strive to be as prepared as Emily here. Source:

Of course, the symptoms listed above can be caused by many different diseases and disorders, so your doctor will order the proper tests prior to your diagnosis.

Carcinoid syndrome can cause carcinoid heart disease because the heart valves thicken, and as a result, they may leak. It can eventually lead to heart failure. Treatment options such as surgery to repair damaged heart valves is sometimes recommended.

Another problem that can occur as a result of carcinoid syndrome is bowel obstruction. This happens when cancer has spread to the lymph nodes near the small intestine and can cause kinking of the intestine. Surgery may be necessary to remove the obstruction.

Carcinoid crisis causes a severe episodes of low blood pressure, disorientation, and breathing problems. A carcinoid crisis can be triggered by anesthesia and is often fatal. Pre-surgery medications can reduce the risk.

If you are living with carcinoid syndrome, support is available. For a list of online and in-person support groups, click here.

If you need financial assistance to afford your medications, contact the Healthwell Foundation. They have a bevy of resources that can help ease your financial burden.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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