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BellaOnline's Neuromuscular Diseases Editor

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My Family Health Portrait 3.0 Resource


The My Health Family Portrait version 3.0 tool can help you map out your family health history. The Office of the Surgeon General and National Human Genome Research Institute (part of the National Institutes of Health) developed this resource. Available online in English, Spanish, Portuguese and Italian, this tool is simple and easy to use. You can find the address below in Resources.

Many of the neuromuscular diseases are genetic and affect multiple family members. Also called a medical family tree or pedigree, your family health history may help you and your medical providers determine the pattern of illnesses and medical conditions that affect your family. This allows health providers to more effectively assess your risk for various diseases, determine what types of diagnostic and screening tests to order, and assess the risk of disease for other family members, including unborn children.

In just a few minutes, I entered my family health history. The tool first asked for my health history. I then entered information about my siblings, parents, grandparents, and aunts and uncles. The tool then generated a report of my family health history, available in table and diagram format.

I then downloaded the report onto my own computer. According to the information available on the website, none of my information was kept at the website, helping to ensure my privacy. I will decide who sees this information. If I choose to share this information to family members, the site recommends that I encrypt any information sent via email to protect privacy, or transfer the information to a portable memory device (i.e., CD) and deliver it in person or by mail.

While I completed the information from what I already knew about family history, it would be beneficial for me to collect additional medical information from family members. After completing the tool, if I choose to share this report with family members, they can use the information I entered as a starting point. Each family member can “re-index” the information, putting themselves at the center, and start their own family medical tree. Through sharing family health history information, we will be able to build a more comprehensive and useful family health tree.

The tool is also compatible with electronic health records (EHRs) and electronic personal health care records (PHRs), making the tool easy to use for your health provider. Any information that I give to my health care provider, including my family health history, falls under the protection of HIPPA privacy rules. The Family Health Portrait is compatible with Microsoft Health Vault for users of that service.

Help to complete the history is available through a help desk by telephone (888.468.4423) or email (ncicbiit@mail.nih.gov). Requests for assistance for saving or copying information to or from Microsoft HealthVault should be directed to http://support2microsoft.com/ph/1542.

My Family Health Portrait was recently updated for version 3.0 from version 2.4. The previous version can be accessed until May 31, 2015.

Overall, I found My Family Health Portrait to be an easy to use and valuable tool for creating my family medical history. It will become even more useful as I collect information from family members. I plan to share this information with my physician. You might also find this tool to be useful for communicating this important information to your health care providers.

Resources:

Healthvault.com website, (2015). Retrieved on 5/21/15 from https://www.healthvault.com/us/en .

Mayo Clinic staff, (2014). Medical history: Compiling your medical family tree. Mayo Clinic website. http://www.mayoclinic.com/health/medical-history/HQ01707 . Retrieved 7/1/11.

My Family Health Portrait website, (n.d.). Learn More About My Family Health Portrait. Office of the U.S. Surgeon General and National Human Genome Research Institute (NIH). Retrieved on 5/21/15 from https://familyhistory.hhs.gov/FHH/html/static/faq_en.html .

My Family Health Portrait website, (n.d.). My Family Health Portrait. Office of the U.S. Surgeon General and National Human Genome Research Institute (NIH). Retrieved on 5/21/15 from https://familyhistory.hhs.gov/fhh-web/home.action .

U.S. Department of Health & Human Services website, (n.d.). Surgeon General’s Family Health History Initiative. Retrieved on 5/21/15 from http://www.hhs.gov/familyhistory/ .

FTC Disclosure: This website tool was accessed without cost and is available to the general public for free.


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Use these prompts to start journaling about neuromuscular disease.
Read about my visit to an MDA Summer Camp.
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Content copyright © 2015 by Jori Reijonen, Ph.D.. All rights reserved.
This content was written by Jori Reijonen, Ph.D.. If you wish to use this content in any manner, you need written permission. Contact Jori Reijonen, Ph.D. for details.

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