In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.

There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease.  Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts.  They’ve also designated March as Multiple System Atrophy Awareness Month.  Their goal?  “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.  Together, we can make miracles happen for MSA.”

What can you do to help?  Learn about MSA and help spread the word.  Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills.  It is very rare for someone to live 15 years with MSA.  One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease.  As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.

See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient.  It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.

March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves.

This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health.

It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska.

With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS is at least 2-3 times more common in women than men), and slightly more than half have the relapsing-remitting form of the disease (RRMS).  We also have 1,400+ patients with primary progressive MS (PPMS), 2,200+ with secondary progressive MS (SPMS) and 580+ with progressive relapsing MS (PRMS).

Some of the most commonly reported MS symptoms in our community include bladder problems, brain fog, excessive daytime sleepiness and stiffness/spasticity.  What are our members taking for these issues – as well as for MS itself?  From disease-modifying treatments (DMTs) like Copaxone, Avonex and Tysabri to steroids like Prednisone to symptom-specific medications like Baclofen and Modafinil, our members have submitted hundreds of evaluations for nearly all available treatment options.  (Click on each drug name above to find out how they rate the effectiveness, side effects, cost and more.)

Our members are not only sharing their experiences with treatments and symptoms on their PatientsLikeMe profiles – they’re also chatting about them.  A lot.  To date, the MS forum room has over 786,000 posts! Some of the most frequently used forum tags are CCSVI (“The Liberation Procedure”), Low Dose Naltexone (LDN), SSDI (Disability Insurance), Fatigue, “LimboLand” and Research.  (Click on each category to see what patients are saying about the topic.)

Piqued by all the knowledge found in our MS community?  This is just the the tip of the iceberg – and the kickoff of our MS coverage this month.  Stay tuned for more about what our MS members are sharing and learning during MS Awareness Week (March 10-17th), organized by the National Multiple Sclerosis Society (NMSS).

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.”

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.

It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.

WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo.  A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.”   “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.