----- Forwarded Message -----
From: GARD Info <GARDinfo@mail.nih.gov>
To: "alcwert@yahoo.com" <alcwert@yahoo.com>
Sent: Thursday, February 15, 2018 10:41 PM
Subject: Tubular aggregate myopathy (TAM)
Dear Mr. Siewert,
You recently contacted the Genetic and Rare Diseases (GARD) Information Center about tubular aggregate myopathy (TAM). You kindly shared that you have a very actively debilitating form of this disease. You were diagnosed through muscle biopsies taken and evaluated by the Pathology Department at at the University of Michigan. You have taken a number of medications, including Verapamil, Dantrolene, morphine, oxycodone, Lyrica, and 100mg Fentanyl patches at various times to attempt to ease the pain, but didn't find much success. Physical therapy was also not the answer for you, causing pain instead of decreasing it. After much trial and error, you have discovered a medication and supplement regimen which has resulted in significantly less muscle pain, fewer fasciculations, less cramping, and sleep not disturbed persistently by pain and/or cramps. You understand that there is no universally effective treatment and that relief can be fleeting, but are so happy with your results that you wanted to share it with others. Your specific cocktail includes Clonazepam, Coenzyme Q-10 with PQQ (coupled with L-carnitine, Omega-3 complex, Trans-resveratrol), B Complex vitamins, and Vitamin B-12.
Thank you for contacting GARD and sharing this very personal information. How wonderful that you have found a combination of supplements and medications that has given you such amazing results! We always appreciate hearing from members of the rare disease community, as it gives us a perspective that you cannot get anywhere else.
When we get feedback like yours, we always want to help by providing some resources where you can further share your story and/or advocate for your rare disease.
While it is true that not everyone will enjoy the same level of success you have with this specific regimen, it still makes sense to share your success. If you aren't already connected with them, we encourage you to reach out to the Tubular Aggregate Myopathy group on Facebook.
There are also groups within the rare disease community that allow you to share your story. Two well-known groups are Global Genes and the National Organization for Rare Disorders (NORD). Click on the organization names above to go directly to their "share a story" page. More information about each organization is provided below.
Global Genes a nonprofit advocacy group focused on improving the lives of all those affected by rare diseases provides toolkits and webinars (both most easily found under Resources in left hand tab menu) covering a range of topics including:
How to Promote Your Rare Disease Story through Social Media
Using Storytelling to Raise Awareness for your Rare Disease
Global Genes
World Headquarters
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Phone: 949-248-RARE (7273)
Contact form
Website:
globalgenes.orgThe National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. NORD has information on advocating for a rare disease.
Ways to advocate for your rare disease
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 1-800-999-6673 (voicemail only)
Telephone: 203-744-0100
TDD: 203-797-9590
Fax: 203-798-2291
E-mail: orphan@rarediseases.org
Web site:
www.rarediseases.org/We hope this information is helpful. If you have additional questions or concerns, please don't hesitate to contact us again. The GARD Information Center can direct you to resources that provide disease information, research studies, clinical trials, patient advocacy organizations (supportive resources), medical journal articles, and genetic services.
Warm regards,
Lois Rednal
Information Specialist
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. Information Specialists are available by phone Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays).
PO Box 8126
Gaithersburg, MD 20898-8126
Toll-free: 1-888-205-2311
Telephone: 301-251-4925
TTY: 1-888-205-3223
Fax: 301-251-4911
E-mail: GARDinfo@nih.gov
Web site:
rarediseases.info.nih.gov/GARD Important Disclaimer:
The materials provided are for information purposes only. They are not intended as a substitute for professional medical care. We strongly recommend that you contact a healthcare professional for questions regarding your health. References to any specific individuals, organizations, or commercial services does not represent an endorsement by NCATS, NHGRI, or NIH. We cannot guarantee the accuracy of information from other sources.
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