The Transverse Myelitis Survey

A survey of our members was conducted in January, 1997. The questionnaire was included in the first newsletter of the Association. I requested that the surveys be returned by March. The purpose of the date was to motivate people to complete the survey in a reasonable amount of time -- it was not a deadline. We are encouraging our members to complete the survey, if you have not already done so. If you have the questionnaire, please fill it out and return it. If you do not have a copy of the questionnaire, you may download it from our web site. You may send it to me either as an electronic version by e-mail or you can mail it to me through the postal service. I have reproduced copies of the questionnaire; if you do not have a copy, please contact me, and I will send you one.

All of us want to know more about transverse myelitis; and all of us want for our doctors to understand more about transverse myelitis. We are in a very unique and valuable position to assist them in learning more about TM. If we are going to help doctors better understand tm, this information is going to have to come from you. And we cannot afford to miss one experience; each will teach the doctors something important about this condition. I would like to thank all of you who have taken the time to fill out the survey and return it. I would like to urge each of you who have not filled out their survey to please do so. Our intention is to continue to provide this survey to new members of TMA and to build the base of information regarding TM. We will find methods for disseminating this information to our members and to doctors who diagnose and treat TM patients. For those of you who have sent names and addresses of your doctors, I will maintain a file and be sure that each of them receives whatever results we produce from our analysis.

There is a great deal of work involved in entering the information into a format that can be used for analysis. I have only just begun that process. Because most of the information is open-ended and in text form, the analysis will require a considerable amount of time.

Jessie Danninger will be a participant in the research project. Jessie graduated in 1995 with a B.S. degree in statistics from North Carolina State University and is currently employed as a statistician at the Research Triangle Institute in North Carolina. Jessie was diagnosed with TM in 1993. We will have other assistance during the course of the research process. It is imperative that we produce results that will provide meaningful information for physicians. We will seek guidance from the physicians on our Board of Directors, as well as other medical specialists. We hope to get most of the data entry completed during the winter months. We will keep you informed throughout this process. As we collect information, we will publish it in the newsletter. When a final research product is produced, you will receive a copy. And as we update the data from new members, we will continue to publish the new information in the newsletters.

At present, we have received 103 completed surveys. From the number of returned surveys there are 70 females with tm and 33 males with tm. The following tables present a few important characteristics about the people who returned their surveys.

The majority of people (64 of 103) were diagnosed with TM in their thirties, forties and fifties. The highest number of respondents (28) contracted TM in their forties. There were 7 children who contracted TM under the age of 10. Seventeen of the respondents were diagnosed with TM over the age of sixty.

Regarding the current age of our respondents, the largest number (30) is in their forties. The next highest number of people are in their fifties. The vast majority of our respondents (78 of 103) are between the ages of thirty and sixty-nine. There are four children who are currently under the age of 10.

The majority of the respondents (49) had TM for one year or less when they filled out the survey. There are 26 respondents who had TM for 5 years and longer when they filled out the survey, and only 10 persons who had TM for 10 years and longer when they completed the survey. It is quite evident from this result that most of the people who have contacted the Association have had TM for a short period of time. It is possible that persons who have had TM for longer periods of time are not concentrating their efforts at looking for information about TM as those who have had the diagnosis for a shorter period. If we are going to reach out to these people, we will need to find creative ways to find them. We might be able to contact people who have had TM for longer than 5 and 10 years through an outreach program with neurologists.

The last table illustrates the responses to the survey question which asked respondents to identify the location of their lesions. There were 36 people who responded that there were no lesions found. The remaining responses are remarkable in their diversity. The only unique response representing five people was T10. There are others affected at the T10 level, but their lesions covered a larger area. Most of the locations identified were reported by either 1 or 2 people. The second highest response after T10, was 4 people who identified T6. More than half of the respondents (47) reporting lesions have identified their location as affecting some area of the thoracic region. There are 20 people who identified lesions in the cervical region. Only 6 respondents reported lesions in the lumbar region of the spinal cord.

These are just a few simple examples of the types of analyses we will be able to perform from the questionnaires. What we learn from this research should help doctors and should ultimately help our members. We look forward to hearing from all of you who have not yet returned a questionnaire.