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Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

March is Multiple System Atrophy Awareness Month

March is Multiple System Atrophy Awareness Month

Multiple System Atrophy Month (MSA) was created as a means of generating awareness for this rare, degenerative and fatal disease. Through greater awareness comes care, support and understanding for patients and families, as well as those continuing the fight for research.

Since the 1980s, there has been a growing advocacy effort directed at this disease from advocacy groups, grassroots supporters, healthcare professionals, and research networks.  Physicians and scientists are working diligently to have a greater understanding for a cure but also for MSA patients and the effects on daily life. Increasing awareness for MSA can greatly effect the research for future MSA studies, the driving force being funding and donations. Significant research is currently taking place "mapping" early symptoms that are important to be recognized as part of a neurodegenerative disorder, including syncope/orthostatic hypotension, slowness/change in gait, and violent dream enactment behavior as part of REM sleep. Reports show that biomarkers are missing and therapeutic clinical trials are limited. MSA patients are often initially diagnosed with Parkinson's Disease (PD) and continue on a traditional PD path of medication/treatment (usually with little to no benefit) until someone (caregiver, healthcare provider with some familiarity of the disease, etc.) starts connecting the dots to the black hole that is MSA. 

For those battling MSA, the disease takes away from sufferers the ability to work and be productive, to do simple daily activities like dressing and eating without assistance, and anxiety, depression and emotional instability due, in part, to cognitive impairment commonly associated with the mental and emotional stresses associated with this complex disease. Many MSA patients succumb to secondary conditions of the disease, including pneumonia from aspirating food or saliva into the bronchial tubes, or pulmonary embolism – a blockage of the artery to the lung – due to apnea and blood pressure regulating problems.

The Multiple System Atrophy Coalition is encouraging everyone to support MSA Awareness Month to better educate the public who may not know about the rare disease, and to aid in fundraising efforts for increased research, advocacy, support and education resources for patients and families affected by the disease. If you're interested, Donate today.

Samples of research:

Translational Therapies, by Nadia Stefanova

First Symptoms, McKay and Cheshire

 

 

 

Multiple System Atrophy (MSA) Awareness Month

Multiple System Atrophy (MSA) Awareness Month

Service Animals - Don't get me started

Service Animals - Don't get me started