Site
Map
A. Welcome
B. Table of Contents
1. Patient Services
2. MG & Autoimmune Diseases
3. Demographics/Incidence
4. Patient Care
5. Current Research
6. Program Needs
7. Insurance & Disability
8. Selected Information
9. Internet Resources
10. How You Can Help
11. Sponsors
12. Patient Survey
13. Bulletin Board
14. Chat Room
15. MG Briefing
16. Sponsor Briefing
C. Home
1. Purpose
2. Scope
3. Dedication
4. Acknowledgment
5. Chapter Organization/Bylaws
6. Board of Directors
7. Program Director
8. Medical Advisory Board
9. Disclaimer
D. Patient Services
1. Support Groups
Contact/Location/Maps/Directions/Agenda/Schedule
2. Medication Purchase Programs
3. Indigent Care
4. Medical Referral
5. Information Services
a. Membership
b. Information Care Package
c. Newsletters
d. Brochures
e. 800# Hot Line
f. Conferences/Workshops
g. Videos
h. Hospital/Health Fair Information
i. Thymoma Cancer Information
j. Physicians/Healthcare Professionals Information
k. Chat Room
l. Bulletin Board
E. MG & Autoimmune Diseases
1. Definitions
a. Basic
b. Nice to know
2. Cause
3. The Genetic Link
4. Symptoms
5. Diagnosis
6. Types of MG
a. Ocular
b. Generalized
c. Congenital
d. Transient Neonatal
e. Seronegative-Antibody Negative
f. Lambert-Eaton
Syndrome
g. Experimental Autoimmune MG
7. Severity of MG
a. Grade I - Specific Muscle Group (i.e. Ocular)
b. Grade II - Generalized
(1) Mild
(2) Moderate
c. Grade III - Severe
d. Grade IV - Crisis - Life Threatening
8. Therapies
a. Medications
(1) Anticholinesterase Therapy
(a) Mestinon (Pyridostigmine Bromide)
(b) Prostigmin (Neostigmine)
(c) Mytelase Chloride (Ambenonium)
(d) Mestinon Time Span
(e)Mestinon Syrup
(2) Steroid Therapy - Carticosteroids - Prednisone
(3) Immunosuppressant Therapy
(a) Imuran (Azathioprine)
(b) Cytoxan (Cyclophosphamide)
(c) Cyclosporine
(d) CellCept (Mycohenolate Mofetil)
b. Phasmapheresis/Plasma Exchange
c. IVIG (Intravenous Immunoglobulin Therapy)
d. Supporting Therapies
(1) Atropine
(2) Pro-Banthine (Propantheline Bromide)
(3) Ephedrine
e. Surgery - Thymectomy
9. The Cancer Connection
a. Prevalence
b. Symptoms
c. Diagnosis
d. Analysis
(1) Staging
(2) Histology
e. Treatment
(1) Surgery: Thymectomy
(2) Radiation
(3) Chemotherapy
f. Clinical Trials
g. Follow-up Questions
h. Follow-up Treatment
i. Remission - Reoccurrence - Survivability
10. Medications to Avoid
11. Alternative Medicine - Considerations
F. Demographics
Who's affected - Age - Race - Sex
G. Patient Care
1. Managing Your Care
a. Be Informed: A Patient's Information Care Package
b. Maintain Your Medical History/Treatment
c. Get Medical ID Bracelet
d. Your Family Physician and Neurologist
e. Support from Family & Friends
f. Participation in Support Group
g. Use of Other Resources: Local Hospitals - National Foundations
h. Nutrition
i. Exercise & Your Heart
j. Anesthetics
k. Dental Care
l. Sleep Apnea
m. Environmental Factors
(1) Weather
(2) Housing
(3) Exposure to Disease
2. Conserving Your Strength
a. Overview
b. At Home or Work
c. In the Kitchen
d. Personal Hygiene
e. At the Mall/Shopping
f. Travel
3. Visual Problems
4. Emotional Health
5. Potential Life Threatening Problems
a. The MG Crises
b. Respiratory (Pneumonia)
c. Chewing/Swallowing
d. Stroke - Heart Attack - Cardiac Arrest
6. Emergency Care
a. At Home or Work
b. At the Hospital
(1) The Triage Process: Urgent vs. Emergent
c. The Patient's Role
d. The Physician's Role
(1) Diagnosis/Symptoms
(2) Medical Treatment
H. Current Research
Programs: Description & Funding
(May include links to specific sources)
I. MG Program Needs
1. Research
2. Services & Information Programs
J. Insurance & Disability
(Include Social Security link)
K. Selected Information
1. Instructions
2. Publications/Brochures (links)
3. Journal Articles (to be built)/References - links to publishers
4. Conference/Symposia Presentations
5. Book Abstracts
6. Current Newsletter
7. Chapter Newsletter Articles (past)
8. Patient Histories
9. Bibliography
10. Videos
L. Internet Resources
1. Instructions
2. National MG Foundation
3. American Autoimmune Related Disease Association
4. Rare Diseases Association
5. National Health Council (?)
6. Medlars/Medline at NIH
7. National Cancer Institute
8. National Conferences/Symposia/Workshops
9. Major Health Care Information Resources
a. American Cancer Society (link)
b. American Heart Association (link)
c. American Diabetes Association (link)
d. Muscular Dystrophy Association (link)
e. American Association of Autoimmune Diseases (link)
f. American
Association of Rare Diseases (link)
M. How You Can Help
1. Membership
2. Contributions
3. Sponsorship
4. Participation
a. In Support Groups/Chapter Meetings/Workshops
b. Newsletter Contributions
c. Fund Raising Programs
d. Sharing Your Medical History
N. Sponsors (and links)
1. Geographic Area (Richmond)
a. Hospitals/Clinics
b. Pharmacies
c. Home Health Care
d. Health Clubs
e. Medical Supply Stores
f. Dentists
g. Health Food Stores
h. Insurance (Health/Home Care/Nursing Home Care)
i. Retirement Homes/Assisted Living
j. Banks
k. Others
O. Bulletin Board
P. Chat Room
Q. MG Briefing
R. MG Sponsor Briefing (ID Control)
2304
Angus Road
Charlottesville, VA 22901
Phone: 434-295-9861
Fax: 434-295-1909
