28 May 2012

FMD Awareness Day - July 23, 2012

On Monday, July 23, fibromuscular dysplasia patients and those who are family members, friends, and healthcare providers to fibromuscular dysplasia patients are asked to join in a global awareness event to raise the disease's profile and contribute to rare disease research.

Participating in the event is as involved as you want to make it!

1) Wear a necklace or bracelet of red beads. Be sure to explain to others why you are wearing the beads. Use social media (Facebook, Twitter, etc) to share a photo of you wearing your red bead necklace or bracelet and share your story about why you are wearing it. Encourage others to participate! (Why red beads? The primary form of FMD — the medial form — is said to look like a "string of beads" upon angiogram. Red is the color of blood.)

2) Donate your lunch money to rare disease research. Instead of going out for lunch, pack a lunch! Contribute the $5-$15 you would have spent on lunch to the CoRDS Registry at Sanford Health. Simply mail a check to Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. Encourage others to participate! Make lunch a communal event—eat lunch with a group of friends or co-workers and make sure to share stories of how FMD has impacted participants' lives. Take a photo of your lunch and share it via social media.

3) Contact your local media or hospital public relations team and ask for an opportunity to share your FMD story. Be sure to emphasize the angle of what it means to live with FMD - as a patient, spouse, caregiver, etc. FMD Chat's Readings & Resources page at fmdchat.org links to several helpful articles to explain FMD from a medical standpoint.

4) Enter to win a one-of-a-kind red beaded necklace, specially made for FMD Awareness Day! Donate $2 to FMD Chat by June 30, 2012. Each $2 donation represents a chance to win. All donations can be used to cover printing and postage costs for FMD Chat materials, which are sent to healthcare providers and patients. Visit fmdchat.org to enter.


FMD Awareness Day is solely the creation of FMD Chat. For more information, visit fmdchat.org, facebook.com/fmdchat, or twitter.com/fmdchat.

(Special thanks to "Me, Myself & Irene" for her creative and inspiring ideas to raise FMD awareness.)

12 May 2012

Getting Out More Than You Put In

It's a matter of return on investment. We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In love, in life, in our family, in our work, in our passions. There are the lucky ones for whom work — which brings the most concrete return on investment — also brings the esoteric returns: happiness, satisfaction, pride, accomplishment. And yet there are those for whom their passion brings these things while failing to bring in the necessary financial returns to continue doing them. How does one balance what one needs to do with what one loves to do?

A fellow health activist posed a question on Wego's forum — how could she translate her passion for being a health advocate and helping others into a paying gig? I had no answer for her, short of being hired on to a pre-existing health advocacy organization or starting her own organization. Either way, she would need to be willing to work another job for income or do without income until the organization was well established enough to both generate finances enough to cover necessary advocacy expenses and pay a salary. Neither option is an easy go, and, of course, neither option comes with a guarantee of success.

Why does it have to be so hard for those who are willing to help to be able to help? Good help is hard to find, yet there is a talented bank of health advocates that is underutilized, or worse taken advantage of, simply because these advocates are patients. Patients who are health advocates most often do not come with degrees in social work, psychology, nursing, or adult education that are typically required of professional healthcare advocates. This lack of training is not an indication of a lack of ability; rather it is a result of the fact that many patients come into advocacy later in life. Patient advocates are motivated by their personal experiences. What they have to offer is a special insight into the disease process that can not be taught by any degree program. Their skills, cliche as it may be, come from the school of life and are therefore uniquely genuine. What technical skills are required of professional advocates — HIPPA compliance, conflict resolution, team building, medical coding, active listening, redirection, and so forth — can be taught from the book. No one can teach how to be a patient. Having been a patient doesn't even necessarily mean that one is able to completely understand another patient's experience. Yet having been a patient, having dealt with a disease, endows one with a degree of compassion and empathy that simply is not felt by those who have not suffered the disease at all.

Our healthcare system must make better use of this wealth of untapped resources. Bring these passionate advocates into the medical office. Put them to work. Allow a human connection back into medicine. We connect and communicate with stories, and as we are permitted to tell our story to another, we are suddenly made to feel less afraid, less alone because in that moment comes recognition of a shared narrative, in that moment "I" becomes "me too," which is at least double the return on investment.