Chronic Invisible Illness


Joy H. Selak and Dr. Steve Overman

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Patient Resources


Most medical conditions have an associated organization or informational arm. Abundant helpful resources for patients are available through web searches using key words of illnesses or symptoms. For those who do not yet have a clear diagnosis, there are general medical sites with search engines that will match symptoms to medical conditions. Also, there are sites to help patients cope with particular symptoms, such as chronic pain. Once diagnosed, patients can find help and support in managing illness and accessing care through illness support and research organizations.


Almost every site provides additional resources through recommendations or an online store. We list below sites that we have found helpful. If there is a site or organization that you find helpful, please email us with your suggestion: joy@joywrites.com.


Patient Support Organizations 

(* indicates groups to which authors have been guest speakers)

*APS Foundation of America(Antiphospholipid Antibody Syndrome)
PO Box 801
LaCrosse, WI 54602-0801
www.apsfa.org

American Cancer Society
National Home Office
250 Williams Street NE
Atlanta, GA 30303
(800)227-2345
American Cancer Society
www.cancer.org

*American Chronic Pain Association
P.O. Box 850
Rocklin, CA  95677
(919) 632-3208
(800) 533-3231
www.theacpa.org

*Arthritis Foundation

PO Box 7669
Atlanta, GA  30357-0669
(800) 283-7800

www.arthritis.org

 

Autoimmune Advocacy Alliance

PO Box 826

Freeland, WA 98249

(360) 331-1740

www.a3autoimmunity.org


*CFIDS Association (Chronic Fatigue Syndrome)
PO Box 220398
Charlotte, NC  28222
(704) 365-2343
www.cfids.org
 
Bent but Not Broken:Providing Emotional, Educational & Financial Resources to Patients & Their Caretakers Living With CFIDS/CFS
www.bentbutnotbroken.org

Massachusetts CFIDS/ME & FM Association
P.O. Box 690305
Quincy, MA 02269-0305, USA
(617) 471- 5559
www.masscfids.org

Crohn's and Colitis Foundation
386 Park Avenue South, 17th Floor
New York, NY 10016
(800) 932-2423
www.ccfa.org
 
*The National Fibromyalgia Association
2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
(714) 921-0150
www.fmaware.org 

*Gastroparesis Patient Association for Cures and Treatments
702 Winebary Circle
Lewisberry, PA  17339
1-888-URG-PACT (800) 874-7228
www.g-pact.org

National Headache Foundation
820 N. Orleans, Suite 411
Chicago, IL  60610
(888) 643-5552
www.headaches.org
 
*Interstitial Cystitis Association
1760 Old Meadow Road, Suite 500
Maclean VA 22102
(703) 442-2070
www.ichelp.org
 
Lupus Foundation of America
2000 L Street N.W. Suite 410
Washington, D.C. 20036
(800) 558-0121 (information request line)
(202) 349-1155 (main office)
www.lupus.org

*Lyme Disease Association
PO Box 1438
Jackson, NJ 08527
(888) 366-6611
www.lymediseaseassocation.org

*The Mastocytosis Society
PO Box 129
Hastings, NE 68902-0129
www.tmsforacure.org

*MPN Education Foundation (myeloproliferative neoplasms)
www.mpninfo.org
 

*Myasthenia Gravis Foundation of America
355 Lexington Avenue, 15th Floor
(800) 541-5454
www.myasthenia.org
 

The Myositis Association (TMA)
1737 King Street, Suite 600
Alexandria, VA  22314
Harrisonburg, VA 22801
(800) 821-7356
www.myositis.org

National Multiple Sclerosis Society

733 Third Avenue
New York, NY  10017
(800) 344-4867
www.nmss.org

*National Neutropenia Network
PO Box 1693
Brighton, Michign 48116-5493
www.neutropenianet.org

*The Neuropathy Association, Inc.
60 East 42nd Street, Suite 942
New York, NT 10165
Tel: (212) 692-0062
www.neuropathy.org

National Osteoporosis Foundation
1150 17th Street NW, Suite 850
Washington, D.C.  20036
(800) 231-4222
www.nof.org

*Parkinson’s Disease Foundation
1359 Broadway, Suite 1509
New York, NY 10018
Tel:(212)923-4700
www.pdf.org

*The Foundation for Peripheral Neuropathy
485 Half Day Rd, Ste. 200
Buffalo Grove IL  60089
www.foundationforpn.org

*Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA  01923

(800) 722-HOPE (4673)
www.scleroderma.org 

American Sickle Cell Anemia Association
DD Building at the Cleveland Clinic
10900 Carnegie Avenue
Cleveland, OH  44106
(216) 229-8600
www.ascaa.org

ViaCord Blood Bank
Research in Sickle Cell Anemia
245 First Street, 15th Floor
Cambridge, MA 02142
(866) 668-4895
www.viacord.com 

*Sjogren's Syndrome Foundation

6707 Democracy Blvd, Suite 325
Bethesda, MD   20817
(800) 475-6473
www.sjogrens.com
 
Spondylitis Association of America
16360 Roscoe Blvd, Suite 100
Van Nuys, CA  91406
(800) 777-8189
www.spondylitis.org
 
American Thyroid Association
6066 Leesburg Pike, Suite 550
Falls Church, VA 22041
(800) THYROID
www.thyroid.org
 
The Vasculitis Foundation
P.O. Box 28660 
Kansas City, MO  64188-8660
(800) 277-9474
www.vasculitisfoundation.org

Patient Support Tools

www.recallguide.org

Recall Guide is a free resource that alerts users to dangerous FDA recalls and helps them track the side effects of their medications.

www.HelpGuide.org

A non-profit guide to health and well being offering a balanced, compassionate view of mental health.

www.healthline.com/health-slideshow/remedies-rheumatoid-arthritis 

Remedies for Rheumatoid Arthritis Flare-Ups

www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_diseaseNutrition

Tips for Inflammatory Bowel Disease

www.draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

4 Steps to Heal Leaky Gut and Autoimmune Disease

www.psoriasis.org/life-with-psoriasis/managing-itch 

Life with Psoriasis: Managing Itch

www.msrrtc.washington.edu/info/factsheets/pain

Managing Your MS Pain

www.onlinenursingdegrees.org/nursingfacts/first-aid-resources 

Nursing Guide: Basic First Aid Resources

www.rehab4alcoholism.com/article/46/a-z-guide-to-alcoholism-and-depression

Rehab4Alcoholism - The A-Z Guide to Alcoholism and Depression: This guide outlines the link between alcoholism and depression. The article explains why this link exists and then provides tips you can implement to make positive change.

 



 


 

General Medical Websites

The web has become the world’s largest source for medical information. Reputable sites can be excellent starting points for someone with a diagnosis and many questions. By searching each site, you can find summary information about your issues. Use caution, though, especially in chat rooms other unmonitored forums. Information in these forums are anecdotal and may be misleading or totally wrong. Here are some recommended sites:


www.CDC.gov 

The Center for Disease Control and Prevention's site, with searchable information and statistics on many health topics, including arthritis. 

www.Health.nih.gov

From the National Institutes of Health (NIH),a verycomprehensive site with information about clinical trials, drug evaluations, anddisease-specific therapies, in addition to general topics.

www.ImprovingChronicCare.org 

Site sponsored by Edward Wagner and the Robert Wood Johnson Foundation to help organizations interested in improving chronic care management.

www.ASKJAN.org

The Job Accommodation Network provides help with questions about workplace accommodations and the Americans with Disabilities Act (ADA) or related legislation.

www.MayoClinic.com

Mayo Clinic’s consumer site, offering health and medicalinformation, self-improvement strategies, anddisease management tools.

www.nlm.nih.gov/medlineplus

Medline Plus is another comprehensive site from the NIH with a medical encyclopedia, medical dictionary, recent medical news, and drug and health information.

www.NCCAM.nih.gov

This site, from the National Center for Complementary and Alternative Medicine, lists alerts and advisories about treatments and medications. It also offers information about alternative medicine and links to conventional medical topics and information.

www.Psychiatry.org

The American Psychiatric Association is the world's largest psychiatric organization representing more than 36,000 psychiatric physicians from the United States andaround the world.

www.APA.org

The American Psychological Association is the U.S. scientific and professional organization representing psychology.

www.participatory medicine.org

The Society for Participatory Medicine is devoted to promoting a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. 

www.Quackwatch.com

As the name implies, this site offers information about health fraud and current concerns about medications and treatments. It lists consumer protection agencies and services and includes comments about questionable services, websites, advertisements, and products, as well as nonrecommended sources of health advice.

www.WebMD.com

A comprehensive, searchable site that offers information forthe newly diagnosed, expert advice, and extensive general health resources.

www.WASHAA.com

This nonprofit organization is dedicated to promoting health advocacy in Washington State, empowering patients and improving healthcare outcomes. Find out everything you need to know about health advocacy.

www.quitday.org

QuitDay.org helps communities around the world become smoke-free and healthy.



Online Newsletters

Another source of information for patients is online newsletters. These may address a specific symptom or illness. They may also have a retail function and/or membership requirements. However, the summary of news and research that they offer can be helpful to patients trying to keep abreast of progress in medical research on the causes of illness, diagnostic tests, and the latest treatment options.


ProHealth: www.prohealth.com

This newsletter is subtitled “commerce with compassion and publishes recent research on fibromyalgia and chronic fatigue and also markets vitamins and supplements.


Fibromyalgia Network: www.fmnetnews.com

This newsletter is dedicated to fibromyalgia treatment and research news. They do not accept advertisements endorsements or pharmaceutical company grants.


ICA Update—ICAeNews: www.ichelp.org

The ICA Update is an award-winning quarterly magazine from the Interstitial Cystitis Association with in-depthstories about interstitial cystitis (IC) research, treatment,and lifestyle issues. The ICA Update is a benefit of membership in the Interstitial Cystitis Association (ICA). Donors who make an annual gift of $45 or more to the ICA also receive this unique magazine.

Pain Medicine News: www.painmedicinenews.com

This excellent newsletter offers information in all areas around the treatment of pain.

The National Pain Report: www.americannewsreport.com/nationalpainreport

A site filled with articles, research updates and helpful information in all subjects around pain. There is also a feature called My Stories for patients to submit their own experiences with pain.

Patient Empowerment: www.patients.about.com

This feature of about.com includes a wealth of information. Columns by patient advocate Trisha Torrey are insighful are insightful and helpful.

Support for Children, Caregivers and the Disabled

Raising a Child with CFS
http://www.gosh.nhs.uk/medical-information/real-stories/raising-child-chronic-fatigue-syndrome

Routines and Children with Disabilities

Raising Children Network  
Royal Children’s Hospital 
50 Flemington Road
Parkville Victoria 3052 
Australia
 
Beneficial Activities for Kids with Special Needs
Metrokids
1412-1414 Pine St.
Philadelphia, PA 19102
 
The Ultimate Guide to Flying with Autistic Children
Jaco Aerospace and Industrial
2050 Lincoln Ave. Pasadena, CA 91103

https://www.e-aircraftsupply.com/aircraft_products/file/guide-to-flying-with-a-child.aspx

 
Teaching Students with Special Needs
Family Education Network 
501 Boylston Street, 
Suite 900 Boston, MA 02116
1-800-498-3264
https://www.teachervision.com/special-education/new-teacher/48460.html

Homeschooling and Special Needs Children
Home School Legal Defense Association 
P.O. Box 3000 
Purcellville, VA 20134 
(540) 338-5600 

https://www.hslda.org/strugglinglearner/sn_Klicka.asp

College Assistance Guide for People with ADHD
US News University Directory

Obesity and Children with Special Needs
AbilityPath 
c/o Community Gatepath 
350 Twin Dolphin Drive Ste 
123 Redwood City CA 94065
(650) 259-8500
http://www.abilitypath.org/health-daily-care/health/growth-and-nutrition/articles/obesity/pdfs/obesity-report.pdf


Disability.gov’s Guide for Family Caregivers
Disability Gov
https://www.disability.gov/resource/disability-govs-guide-family-caregivers/


How Caregivers Can Take Better Care of Themselves
Hometeam
525 Broadway 
New York City , NY 10012
(844)259-1981
https://www.hometeamcare.com/blog/caregiver/caregiver-selfcare/

A Safety Guide for Disabled Pedestrians
Online Loan Calculator
http://www.onlineloancalculator.org/resources/disabled-pedestrians.php

A New Savings Plan for the Disabled
The Wall Street Journal 
1211 Avenue of the Americas 
New York, NY 10036
1-800-568-7625
http://www.wsj.com/articles/a-new-savings-plan-for-the-disabled-1420939307

A Guide for Disabled Homebuyers
Redfin
2025 1st Ave, Suite 500, 
Seattle, WA 98121
+1 877-973-3346
https://www.redfin.com/blog/guide-for-disabled-home-buyers

Financial Assistance for Accessibility Home Repairs and Modifications

Disability Gov
https://www.disability.gov/disability-can-get-help-modifying-home-make-accessible/

Home Accessibility Costs
HomeAdvisor, Inc. 

14023 Denver West Pkwy Bldg. 
64 Golden, CO 80401 
(303) 963-7200
http://www.homeadvisor.com/cost/disability-accommodation/

Chronic Fatigue in the Military
http://www.publichealth.va.gov/exposures/gulfwar/chronic-fatigue-syndrome.asp

The Essential Guide to Traveling with a Medical Condition http://www.insurancewith.com/travelling-with-a-medical-condition/

CDC Chronic Fatigue Resource
http://www.cdc.gov/cfs/pediatric/index.html

Airports and Special Needs Travel: A Complete Guide http://www.friendshipcircle.org/blog/2012/05/03/airports-and-special-needs-travel-a-complete-guide/

Reduce the Noise: Help Loved Ones with Sensory Overload Enjoy Shopping
https://www.retailmenot.com/blog/sensory-overload-while-shopping.html

Academic Accommodation Resources
http://www.ncf-net.org/patient/patient-education2.htm

A Trip to the Orthodontist with Chronic Fatigue: A Resource for People with CFS
http://www.tlortho.com/trip- orthodontist-chronic-fatigue- syndrome-resource-persons-cfs