Raise Your Awareness of ALS (Lou Gehrig’s Disease)

May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis).

Due to our founders’ personal experience with this disease, ALS was the very first condition to have a home at PatientsLikeMe when we launched in 2006.  Five years later, our ALS members now represent the largest ALS patient population in the world, capturing 10% of all newly diagnosed patients in the U.S.

Here are some quick facts about ALS, as reported by our members:

What is PatientsLikeMe’s ALS membership like?

• As of today, we have 4,446 patient members with ALS.
• 59% of our ALS members are male, and 41% are female.

What are the top treatments?

• Our ALS members report using over 1,500 treatments, including prescription drugs, medical devices, physical therapies, etc.
• The most widely used prescription drugs reported by our ALS members are Riluzole (Rilutek),  (Lioresal Oral) and Amitriptyline (Elavil).
• The top lifestyle modification reported by our ALS members is avoiding alcohol, while percutaneous endoscopic gastrostomy (PEG) is the number one procedure cited.
• The top three supplements reported by our ALS members are CoQ10, Vitamin E and Vitamin C.

What are the major symptoms?

• The five most common primary symptoms reported by our ALS members are Fatigue, Fasciculations, Stiffness/Spasticity, Anxious Mood and Pain.

What are ALS patients talking about?

• Some of the most popular topics “tagged” in our ALS forum discussions include experimental treatments such as Lithium Carbonate, Stem Cell Therapy and Low Dose Naltrexone (LDN).  Other hot issues include assistive technology, awareness and clinical trials.

Speaking of Lithium Carbonate, we are very proud of our patient-led research study on the drug that was published in the scientific journal Nature Biotechnology last month. The findings, which refuted a previous clinical trial, garnered a good deal of media coverage for not only showing the real-world effects of the drug (no impact on ALS disease progression was found) but also how patient-reported data can accelerate medical research.

Finally, to put a face on ALS, we’d like to share a current news story here in Massachusetts, where PatientsLikeMe is headquartered.  Former Massachusetts Governor Paul Cellucci talked about his ALS diagnosis for the first time this week on the nightly news show Chronicle.  We were honored to have been featured in the WCVB-TV piece, which included a segment on Stephen Heywood’s battle with ALS as well as an interview with PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Watch the full four-part piece (entitled “The Campaign of His Life”) to see how both Governor Cellucci and the Heywood family are fighting back against ALS.