Multiple Sclerosis (MS) is a frustrating disease not only because those who have it are ill, but because the symptoms vary substantially and can change quickly. Symptoms are often exacerbated by heat. However, thanks to the dedication of many individuals, organizations, and pharmaceutical companies, today there are treatments rather than just medications to minimize symptoms.
There is hope. There are also many web sites devoted exclusively to living with MS and helping families manage the illness for the person who lives with it and those who assist them.
The site of the National Multiple Sclerosis Society (NMSS) has particularly good material for those recently diagnosed with the illness. It also has extensive information on research, clinical trials, and new drugs. Only 15 years ago, there were few medications to impede the progress of MS. The Society’s Professional Resource Center houses the most comprehensive library of MS information in the world, and the site provides links to a number of the materials for healthcare professionals. While anyone can view this material, much of it is more technical than the very readable articles elsewhere on the site.
The NMSS has a series of chapters throughout the nation. They organize support groups, hold fundraising activities, and help persons with MS get the information they need to manage their illness. The site has links to the chapters.
MSActiveSource.com provides everything from basic facts about multiple sclerosis to in-depth MS treatment information. The broad focus is on living well with MS. The site is updated often with news about research and articles about living an active life while managing MS. Experts answer common questions about MS symptoms. Those with MS can be connected with an MS mentor, and those who serve as caregivers for an MS person can also learn about support system. The “Caregivers Corner” has an extensive section on parenting a child who has MS, something not written about much on other web sites or in magazines.
The National Institute of Health titles its site “MS: Hope Through Research.” There is substantial information on symptoms, diagnosis, and treatment, with perhaps the best data on drug therapies and related research. The link entitled “Where can I get more information?” is a terrific guide to the many other organizations that deal with the illness.
The Multiple Sclerosis Foundation (MSF) is concerned with the physical, emotional, and social impact on people diagnosed with multiple sclerosis (MS) and their families. The site describes the varied patient services, which include a toll-free help line, a live Internet Help Line (available weekdays), an “Ask the Doctor” section, and a peer-to-peer forum. This is clearly the most “Internet friendly” site for those with MS and their families. There are also excellent links to other organizations, research topics, and treatment options.
The Accelerated Cure Project is dedicated to curing MS by determining its causes. Newer than the other organizations, it was founded in 2001 as the Boston Cure Project for Multiple Sclerosis and started formally branching out nationally in 2005. The Project is developing a multi-disciplinary blood, tissue, and data bank. You don’t need a science degree to understand all the materials on the site, but it is definitely constructed by and for serious researchers. While not the first place to go for basic information on MS, it is an intriguing site for those who want to learn more about the illness and its causes – clearly an ongoing research effort.
The Multiple Sclerosis Association’s (MSAA’s) mission is to enrich the quality of life for individuals with MS. Its support group link has schedules and contact information for meetings in 36 state, though the number of meetings per state varies widely from three groups forming in California to 15 groups actively meeting in Montana. There is some material on clinical trials and research, but it is not as extensive as that on some other sites.
No compilation of web sites on MS would be complete without references to the impact of heat on MS symptoms. The web site below is part of the MSAA site, and is perhaps the best discussion of why heat causes the frustrating exacerbation of symptoms. In addition, if you go to the main MSAA site (see above) and do a search on the word “heat,” one of the responses will be a catalog of devices to help keep the body cool – many created thanks to technology NASA developed. (The specific site reference is almost 100 characters – it’s easier to use the site search tool.) You can purchase these for ease of moving around in warm climates, but you can also apply cold (such as an ice pack) to your neck or wrists for quick relief when you have no access to space gear.