As with many under-diagnosed diseases, getting the care and support you need can be challenging. In order to receive the best care possible, it's vital that you become your own healthcare advocate. The objective of this section is to help you find the resources and information you will need to support your efforts.
FMD Bracelet Program
A very special "string of beads" for FMD awareness.
We proudly offer this bracelet as a symbol of FMD awareness.
A Letter from our Executive Director, Pam Mace
My name is Pam Mace, and like most of you, I have Fibromuscular Dysplasia (FMD). I was first diagnosed with a left vertebral and bilateral carotid artery dissections after experiencing a TIA (Transient Ischemic Attack or ministroke). I also formed carotid aneurysms that led to several procedures, and a further diagnosis of renal FMD.
With so little information and difficult experiences to deal with, those of us with FMD have evolved into our own little family and depend on each other for support and an understanding of the disease. In honor of our FMD family, I wanted to create a bracelet that would symbolize the unity among us and raise awareness about FMD. Together with Katie Janoch, jewelry designer, FMDSA has created a bracelet that we feel reflects the diverse challenges we face with FMD and the brilliant glimmer of hope for all of us with this disease.
Beads were chosen in the design of this bracelet to represent the “string of bead” appearance of affected arteries that is classic for the most common form of FMD. Brilliant blue to signify the vascular system and a tree charm to represent both the branches of your arteries affected and life itself. The bracelet is exclusive to FMDSA and will serve to raise awareness about this disease. We proudly offer this item as a symbol of FMD awareness. I hope you join me in purchasing and wearing this very special “string of beads” to unite all of us who support FMD awareness. Click here, to print your FMD Bracelet Card to go with your FMD Bracelet. To order your bracelet, pleace contact Maureen Womack at firstname.lastname@example.org
This dictionary includes a lot of terms you will hear related to FMD. It was written specifically with patients in mind.
One of the primary tools you will require as you learn more about FMD is a health dictionary. You will run across many medical terms that will be new to you. This link has a number of dictionary resources to help.
Online Medical Information - Research
This site is operated by the US Dept. of Health and Human Services. This is one of the most comprehensive sites on the web for patient information.
Launched in 1996, www.eMedicine.com comprises the largest and most current Clinical Knowledge Base available to physicians and other healthcare professionals.
This site is provided by the Society for Vascular Surgery. This link will lead you to some very helpful information of tests and treatments that are common to FMD patients. The information is presented in a very user friendly manner.
National Women's Health Resource Center, Inc.
Healthywomen.org is the one-stop shop for women's health information on the web. This site includes frequently asked questions and consumer tips on fitness, nutrition and disease prevention.
MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.
Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs. Please visit their website for more information on FMD and other rare diseases.
Global Genes is a leading rare disease advocacy organization. Their mission is to eliminate the challenges of rare disease. They have developed RARE Toolkits, which we think you may find valuable. Some topics include:
* Parenting a Child with a Life-Limiting Illness
* Genetic Testing: Is This My Path to a Diagnosis?
* Searching for Answers: Contacting Biopharmaceutical Companies Effectively
To view these and other toolkits, please visit their website.
SCAD Alliance To learn more about Spontaneous Coronary Artery Dissections please visit the SCAD Alliance website wheer you will find recent articles and information on research studies.
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
National Stroke Association
The National Stroke Association (NSA) provides education, services, and community based activities in prevention, treatment, rehabilitation and recovery. Their site provides some very informative patient information on stroke.
American Stroke Association
The American Stroke Association is a division of the American Heart Association and offers a wide array of programs, products and services, from patient education materials to scientific statements.
National Kidney Foundation
The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
American Association of Kidney Patients
American Association of Kidney Patients (AAKP) exists to serve the needs, interests and welfare of all kidney patients and their families. Its mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease.
Angel Flight is a non-profit charitable organization created by a group of pilots to arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals and health care organizations.
National Stroke Foundation (Australia)
The National Stroke Foundation is a not-for-profit organisation that works with the public, government, health professionals, patients, carers and stroke survivors to reduce the impact of stroke on the Australian community.
Americans with Disabilities Act http://www.ada.gov/ada_intro.