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«The Transverse Myelitis Association We are pleased that you have found The Transverse Myelitis Association (TMA). The TMA is a ...»

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The Transverse Myelitis Association

http://myelitis.org

We are pleased that you have found The Transverse Myelitis Association (TMA). The TMA is a

not-for-profit international foundation dedicated to the support of children, adolescents, and

adults with a spectrum of rare neuroimmunologic disorders, including Acute Disseminated

Encephalomyelitis (ADEM), Neuromyelitis Optica (NMO), Optic Neuritis (ON), and Transverse

Myelitis (TM). Founded in 1994 by family members and persons with these diagnoses, the TMA was incorporated on November 25, 1996 in the state of Washington and we became a 501(c)(3) organization on December 9, 1996. Membership of the TMA includes individuals with these rare disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. The TMA currently has approximately 9,300 members from more than 80 different countries and has a large number of support groups across the United States and around the world.

Our Mission and Programs Our mission is to support and advocate for individuals diagnosed with the rare neuroimmunologic disorders of the central nervous system and their families by promoting awareness, providing education, fostering clinician-scientists dedicated to these rare diseases through training, and advancing new knowledge through the support of basic science and clinical research. It is our goal to improve the quality of life of individuals with these rare disorders and to create a collaborative environment dedicated to the understanding of these disorders.

We provide numerous services for our members. Our web site offers a tremendous amount of information and creates a support network between persons with these disorders, including the development of local support groups. Our goal is to advance a comprehensive network dedicated to the care of our members through the development of professionals specializing in these rare disorders, centers of excellence focused on these disorders around the world, and our international community support system. Additionally, we are developing strategic research priorities with our Board of Directors and Medical Advisory Board to further the understanding of the causes of TM, ADEM, ON and NMO, and to develop new acute and regenerative therapies. To attract new clinicians and researchers into the rare neuroimmunologic disorder discipline, we have established the James T. Lubin Fellowship. We publish newsletters to update the community on current research and various community outreach events and opportunities.

We support and conduct various educational events through symposia and workshops involving clinicians, scientists, and individuals affected by these disorders for the exchange of information regarding research and treatment strategies. We also support a family camp for children with these disorders and their family members.

You can find a complete listing of all of our support groups on our web site, along with the contact information for our support group leaders. If you do not have access to our web site, we encourage you to contact us or your support group leader to be connected to other members of the Association and to get involved. It is a wonderful way to find support and information in your community, state or country. If there is no support group in your area, please consider starting one. To get started, all you have to do is get in touch with us. There are new support groups getting started all the time. Please also join us on Facebook to meet other members and engage in a dialogue through our website: http://myelitis.org/get-involved/support-groups/ In this packet we have included the latest publication of the TMA. All of the earlier versions of the journals and newsletters are archived on our web site and we urge you to read all of these publications, as they are likely going to be your best source of information about the rare neuroimmunologic disorders. Please thoroughly review our web site for additional information including an excellent bulletin board system, videos of physician presentations from past workshops and symposia, and links to other sources of information, including the Johns Hopkins Transverse Myelitis and Neuromyelitis Optica Center and the TM and NMO Center at the University of Texas Southwestern in Dallas. Adults and children with ADEM and ON are also cared for at these centers.

There are no membership fees for the TMA; we operate exclusively on the basis of voluntary contributions.

We urge you to support the TMA and to make us a regular part of your generous giving.

You are not alone. If we can be of any assistance, please feel free to contact us. We hope that you are doing well. Our best wishes to you and your family.

Sincerely, Sanford J. Siegel President Chitra Krishnan Executive Director Contact The Transverse Myelitis Association If you are interested in becoming a member of the TMA, or contributing to our efforts, please contact us at the information below. The efforts of the TMA are supported largely by our members and through charitable contributions and fund-raising events. Your support to help advocate for and bring awareness to these rare neuroimmunologic disorders through the TMA is greatly appreciated.

–  –  –

The Transverse Myelitis Association advocates for people who have Transverse Myelitis (TM), Recurrent Transverse Myelitis, Neuromyelitis Optica (NMO), Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON) and their caregivers. The language used when diagnosing and describing these conditions can be quite confusing. This overview is meant to provide an introduction to these disorders and to the language used by physicians to describe them.





All of these conditions are immune-mediated disorders of the central nervous system (brain, spinal cord and optic nerves). The immune system is the body’s defense against foreign invaders, such as viruses and/or bacteria. Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these cells become ‘confused’ and mistakenly attack an organ within a person. This is known as autoimmunity. Health care providers sometimes use the term ‘inflammation’ to describe this occurrence. Inflammation refers to situations when immune cells invade human tissue. For example, if there is inflammation in a spinal cord, then immune cells have invaded the spinal cord.

Inflammation can be normal, such as during an infection, or abnormal, such as during autoimmune attacks.

The neuroimmunologic disorders that are supported by the TMA occur when a person experiences an inflammatory attack at some location in their central nervous system. When the spinal cord is affected it is called Transverse Myelitis (TM), and when the optic nerve is affected it is called Optic Neuritis (ON). In Acute Disseminated Encephalomyelitis (ADEM) and Neuromyelitis Optica (NMO) there are various patterns of organ involvement, and in some disorders there is the potential for recurrent events. When the central nervous system is affected, there are multiple kinds of damage that can occur. The connections between the brain and body are like insulated electrical wires. During an immune mediated attack on the central nervous system, the insulation around the wire (myelin) or the wire itself (axon) can be damaged. When an inflammatory attack damages the insulation, the damage is referred to as demyelination.

When the myelin or axon of a neuron is damaged, it is unable to conduct a signal. The symptoms are dependent on which axons are affected. For example, if the wire that carries visual information from the eye to the brain (optic nerve) develops demyelination, then signals are not carried to the brain efficiently resulting in The Transverse Myelitis Association 3 www.myelitis.org a person having blurred or lost vision (ON). If the demyelination occurs in the wires sending motor signals to a person’s legs, then the person has weakness and difficulty walking.

Mechanism of Disease Very little is understood about the disease mechanisms for these disorders. It is believed that a person who develops one of these rare neuroimmunologic disorders likely has a genetic predisposition to auto-immunity, and that there are environmental factors that interact with these genetics to trigger the disease. The specific genetics in each of these disorders is not completely understood and environmental factors have not been clearly identified. In the case of Multiple Sclerosis (MS), a relationship to decreased levels of vitamin D and diminished exposure to sunlight are being considered, but no other factors are suspected for these other neuroiummunologic disorders. It is believed that the immune system response could be to a viral, bacterial or fungal infection, and in the case of TM, a significant number of people have flu-like symptoms, a respiratory infection, or a child might have an ear infection preceding their attack. This immune response might explain why the immune system was revved up. However, it does not explain why the immune system becomes dysfunctional and attacks ‘self.’ Additionally, no one understands why some people have a good recovery from an attack, while others have no recovery.

The central nervous system is separated and protected from foreign agents by the blood brain barrier. For the immune system to attack anywhere in the central nervous system, cells from the immune system have to pass through this barrier. Thus, in the case of these disorders, not only does the immune system become confused, it also has to find a way to cross this protective barrier to get to the brain, the spinal cord and/or the optic nerves. These mechanisms are not very well understood.

Differential Diagnoses Transverse myelitis (TM) is an immune-mediated inflammatory attack of a person’s spinal cord. Sometimes the inflammation has no clear cause and is referred to as Idiopathic TM. The majority of these cases are probably post infectious events, but this can be difficult to prove. In general, individuals with Idiopathic TM do not have recurrences or future inflammatory events. At other times, TM is part of a larger autoimmune process, such as NMO, MS, Sarcoidosis, Sjogrens Syndrome, Lupus, or ADEM. When presenting with TM, clinical care should focus on reducing inflammation acutely and trying to determine if there is an underlying cause.

In rare cases, a person can have more than one inflammatory attack in their spinal cord; this is called Recurrent transverse myelitis (RTM). In each unique episode, the inflammator y attack occur s only in the spinal cord. There is no brain or optic nerve involvement in any of the episodes. It is important in these cases that the inflammatory attack in the spinal cord be identified; the diagnosis cannot be based solely on clinical symptoms, as there can be a worsening of symptoms apart from a new attack in the spinal cord. It is also important that the attack be identified as a unique attack and not associated with an unresolved initial attack.

For example, if a person experiences an inflammatory attack and then two weeks later, the inflammation worsens; this cannot be considered a second attack. The first attack must completely resolve over time and the next attack must occur after this resolution to be considered a subsequent attack. Everyone with recurrent TM must have NMO ruled out. There should also be a rule out of an underlying rheumatic disorder, discussed below.

Neuromyelitis Optica (NMO) involves immune-mediated inflammatory attacks in the spinal cord and/or the optic nerve. A person with NMO is at risk for multiple attacks of spinal cord inflammation or ON, or both.

There is ordinarily no brain involvement, but this is not always the case. There is a blood test for NMO called NMO-IgG that is clinically available. If a person tests positive for NMO-IgG, they have NMO. In approximately 30% of cases, a person may test negative but still have NMO; thus a negative NMO-IgG does not definitively rule out NMO.

The Transverse Myelitis Association 4 www.myelitis.org If a person with Transverse Myelitis presents with a lesion (inflammation) that extends to 3 vertebrae in length or longer, they are at risk for multiple attacks, i.e., it is possible that the attack in the spinal cord is a first attack of Neuromyelitis Optica. This condition is called Longitudinally Extensive Transverse Myelitis (LETM).

Infants and young children seem to be the exception to this situation. Infants and young children tend to have very long lesions that may begin high in the cord (cervical region), and yet they do not seem to have the same risk for multiple attacks as adults with LETM. They have TM. As children can also have NMO, this remains an area that is in need of critical research focus.

Multiple Sclerosis (MS) involves an inflammatory attack that can occur anywhere within the central nervous system (i.e., brain, spinal cord and/or optic nerves). Brain lesions at the time of onset or early in the course of the disease are common. The lesions in the brain are ordinarily identified in a specific pattern; however, lesions may be present anywhere in the white matter. MS involves more than one episode (i.e., recurrent attacks), and the multiple episodes occur in different locations in the central nervous system.

Acute Disseminated Encephalomyelitis (ADEM) involves inflammation and demyelination in the brain and often involves inflammation in the spinal cord. In some instances, there can also be optic nerve involvement.

ADEM may occur after a bacterial or viral infection (post infectious), or following an immunization (post vaccination). The demyelination in the brain is different than a demyelinating attack from MS; white matter lesions tend to be diffuse. ADEM is most often monophasic, although there are rare recurrent variants of ADEM. It can be characterized by headache or seizures and may involve vision loss. The spinal cord involvement is the same as TM, as are the associated symptoms. ADEM is more common in children than in adults.

Finally, Optic Neuritis (ON) ON involves a demyelinating attack of the optic nerve. In isolated ON, there is no brain or spinal cord involvement. An episode of ON may be a first attack of NMO or a first attack of MS.

Working through a differential diagnosis is important. A person may have ON or Recurrent ON and never have an attack in the spinal cord or brain.



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