Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.
- The U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy. This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR) injection that I get every 28 days or a newer injection called lanreotide (Somatuline)). Big news for those with the syndrome. Fortunately for me, my syndrome is very mild and occurs very infrequently.
- For Rare Disease Day, The Healing NET Foundation has released this video:Rare Disease Day: NET Cancer & Carcinoid syndrome.Watch this video on YouTube.
saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “
- The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer. The show is now on YouTube:Learning and Thriving with a Rare DiseaseWatch this video on YouTube.
Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.
Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease. It exists. It affects people’s lives. We all need more treatment options.
May we all have the possible outcomes,