From the Editor
Sandy Siegel

I have two important issues to address in this column.  The first concerns a program focused on quality medical care for people with the neuroimmunologic disorders.  The second issue concerns the ways we distribute information to our members.  Both issues will need your participation to succeed! 

The Transverse Myelitis Association is developing a network of physicians interested in caring for patients who have long-term symptom management issues from TM, NMO, ADEM and ON.  I presented my vision for this network of physicians in my column in the TMA Journal Volume I.  We are initiating this project by establishing a network of family practice or general practice physicians and pediatricians.   

We have formed a team to manage this important project.  Dr. Angela Middleton is a family practice physician in Virginia who also has transverse myelitis.  Dr. Benjamin Greenberg is the Co-Director of the Johns Hopkins TM Center and serves on the TMA Medical Advisory Board.  Dr. Greenberg and the other physicians associated with the Johns Hopkins TM Center have a strong and long-term commitment to providing education to physicians about the acute and long-term treatment of the neuroimmunologic disorders.  This education component will be a critical element of the physician network.  I will also serve on this team. 

Angie, Ben and I recently had a meeting exclusively devoted to our work on this project. We recognize the many challenges involved in accomplishing this task and we have accepted that it will take a long time to develop.  We also recognize the critical value of this endeavor and we are committed to doing the work required, however long it takes.  The results for all of you will be a network of family practice physicians and pediatricians who have access to information about the neuroimmunologic disorders, information regarding the treatment strategies for the symptoms of these disorders, and experience with caring for people with these disorders.  It will often be the general practitioner that has openings available on short notice, when it may take weeks to get in with the specialist.  This is by no means an attempt to phase out the specialists, but to give you more guidance as far as the resources that are available for your medical care.  Your general practitioner should know you better than any of your physicians, because their training requires them to look at the whole picture.

We need your help!  If you are currently seeing a family physician or pediatrician who is providing you with excellent medical care, including the treatment of your or your child’s symptoms from TM, NMO, ADEM or ON, we need for you to send us their names and contact information.  This information can be submitted on a form that has been set up by Jim on our web site: http://www.myelitis.org/pnr/ or you can send me the information via an email or by letter.  Please provide the physician’s complete name, mailing address, phone number, and if possible, an email address.  Please identify whether the doctor is a family/general practice physician, an internal medicine physician or a pediatrician.  We are also asking you to provide us with all of your contact information in connection with this reference in case we need additional information from you about the basis of your recommendation.  In your referral, please include how long you have been seeing this physician and please confirm with the doctor’s office that this physician is accepting new patients. If this project proves successful, we also hope to eventually extend it to include other specialists, such as neurologists, urologists, psychiatrists, etc.  As many of you already know, some specialists are more knowledgeable than others when it comes to these rare neuroimmunologic disorders.

The symptoms from TM, NMO, ADEM and ON are complex and difficult to manage.  Some people have remarkable recoveries from their immune attacks.  Unfortunately, even for those who have good recoveries, there are often symptoms from myelin and neuronal damage in the spinal cord that will go on for the long term.  Symptoms such as nerve pain, paresthesias, spasticity, depression, and fatigue typically involve focused attention from a physician.  Multiple treatment strategies are frequently required before the most effective therapies or combinations of therapies are found.  There are no silver bullets and there is most definitely not a one-size fits all approach for treating these symptoms.

Because the symptoms of these disorders are so difficult, finding effective treatments and going through the process of finding quality medical care, in general, can become a very frustrating and demoralizing process for many people.  I am not overstating the magnitude of the problem.  I have very first-hand evidence regarding this issue, because when many of you become significantly frustrated with this process, you often call me or send me an email message seeking help.

Not every medical or health issue you experience will derive from the myelin and neuronal damage that occurred in your spinal cord.  It is important to be working with a physician who can determine which of your issues are neurological and which issues could be associated with a different diagnosis, i.e., having bladder dysfunction from TM doesn’t make you immune from having your prostate grow to the size of a grapefruit.   

The goal of our physician network project is to help people find the highest quality medical care.  If you are currently receiving medical care from a physician who you would recommend to others in the TMA community, please take the time to get me this information.  We are an international organization and we are very interested in serving our international membership.  Please send us the names of your physicians who you would recommend from around the world.  If you are a physician and would be interested in serving on the physician network team, we would appreciate your participation. 

The TMA considers patient, caregiver and medical professional education among the most important services we provide to our membership.  We know that the better informed you are, the more effective you will be in advocating for your medical care.  The costs of providing you with this critical service have recently increased in a very substantial way.  Postage costs have the single largest impact on our ability to provide you with information.  This past May the United States Postal Service very significantly increased their rates.  The postal service created a premium rate for all mail that has to be manually sorted; those pieces that are too large or too thick to be sorted through their machines.  Unfortunately, almost everything we mail is too large and too thick to be automated mail. 

The new postal rates will significantly increase our costs for mailings in the United States.  New TMA members receive a packet of information that used to cost us $2.07 in postage.  The new postage cost for this packet is $2.47.  We are going to experience similar increases in the mailings of the TMA journals and membership directories. 

While the mailings in the United States will be more costly, we believe we can absorb these additional costs and not reduce either the frequency or the size of our mailings for our national members.  Unfortunately, this is not going to be possible for our mailings to international members.  The cost of mailing the new member packets and journal to the majority of our international members was $6 for a single envelope; and this was for a letter post economy rate, the lowest-cost international option.  The US postal service has terminated this class of mail with the changes imposed in May.  The new rate for the lowest class of international mail is over $10 for a single envelope.  It is just not possible for the TMA to manage those increased postage costs.

We are very fortunate and so grateful to a number of our international support groups who have taken on the responsibility for printing the TMA publications and mailing this information to TMA members.  Our support group in the UK does all of the printing and mailings for members in the UK and to our membership across Europe.  These mailings go to well over 700 members.  In addition to taking on the work of printing and mailing these publications, our UK support group also raises their own funds to cover these costs.  We owe Geoff Treglown, Lew Gray, Sally Rodohan and the UK support group a tremendous debt of gratitude for their willingness to take on this important work and we urge our members in the UK and Europe to contribute generously to support these efforts.

Errol White and the Australia support group also do the printing and mailings for our members in Australia and New Zealand.  Jenny Moss and Mart Uys and our support group from South Africa have recently taken on the responsibility for these mailings to our members in South Africa.  By their taking on this critical work, they have made it possible for our members in these countries to receive all of the information mailed by the TMA. 

The increase in postage costs is going to significantly change how we distribute information to our international members who do not live in a region of the world covered by the three support groups doing these mailings.  The regions that will be impacted by these changes include South and Central America, all of Asia, the Middle East, India, Pakistan and the Pacific.  

The TMA will continue to do biennial mailings of the membership directories.  For our international members, these will become regional directories which list members only from your region of the world.  To honor the privacy of our members, we will not post any of these directories on our web site.  Consequently, there is no other way for us to get this critical support information to our members.  The new member packets will provide detailed guidance regarding the information that is posted on our web site, and the many ways to learn about the neuroimmunologic disorders and to find support.  We will continue to mail the newsletters to international members twice a year, and we will mail the regional directories biennially.  The TMA journals will need to be read from our web site.  Thus, it is very important that you check our web site often for new postings and information.  The entire archives of our newsletters and journals can be found under the link newsletters.

The TMA has large numbers of members in Canada, Brazil and India.  We need people to volunteer to do the printing and mailings to people in your country and region of the world so that all of our international members have the same access to this critical information.  The amount of work involved in each mailing is very small.  Also, we are not asking you to bear the costs of these mailings; the TMA will pay for the printing and postage costs.  If you can help us with this important work, please get in touch with me.

To change our publication and mailing practices was an extremely difficult decision for us.  Pauline and I gauge the value of these mailings by thinking about what it would have meant for us to receive this new member packet in the mail when she was first diagnosed.  We were totally on our own and we had absolutely no information.  The information is critical; so is the envelope showing up in the mailbox, or whatever the receptacle for collecting mail looks like in Bangladesh.  When people are given the diagnosis of a disorder that they’ve never heard anything about and wouldn’t have the slightest idea where to find another person who has it, having something tangible representing a network of people who care about what is happening to them, offering information to help them manage their medical care and offering guidance and support through this difficult journey is just an invaluable gift.  We know and understand; and that is why we will continue to mail information to everyone; it just can’t be the big $10 envelope.

The TMA is an international organization.  We are as concerned about our members in Pakistan as we are for our members in Ohio.  If you live in a region of the world where we need your help, please consider providing our members in your country with this important service.  Get into your membership directory and see if you can’t find a group of people who will be willing to take on this effort together.  I am not asking you to do something that you are unable to do.  If I figured out how to do all of this stuff, so can you.

Please take good care of yourselves and each other.