fibromuscular dysplasia support, education & advocacy
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Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include dissection or aneurysm most commonly in the renal and carotid arteries, low bone density, joint laxity, degenerative disease in the spine, migraine-like headaches, dizziness, and tinnitus. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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Monday, July 8, 2013

Planning for Emergencies With FMD

FMD Chat's Patient Advisory Panel Member Fran Saplis is a fibromuscular dysplasia patient and registered nurse. Her experience gives her a unique perspective on preparing for medical emergencies. Below, Saplis shares some of her knowledge and tips from emergency medical service providers with the FMD Chat community: 

For those of you who don’t know me, I am a planner. I LOVE to plan (and organize). I could go on “Let’s Make a Deal” and win every time, as I usually have everything but the kitchen sink with me “just in case." I also am extremely persistent and when faced with a task, latch on like a pitbull and don’t let go until I have exhausted every angle and turned over every stone. What I have learned with fibromuscular dysplasia is that it can be hard to plan for—perhaps my lesson here.

My husband and I are relocating back to Houston from the Chicago suburbs. We have never lived by family, my husband travels a great deal, domestically and internationally, and the cherubs are gone so I do much better knowing that I have a plan, as I am alone a large amount of time. I have spent a great deal of time researching doctors in the Houston area and am confident that I will be in good hands with my FMD diagnosis, after receiving recommendations from Dr. Jeffrey Olin (Mt. Sinai) and Dr. Ester Kim (Cleveland Clinic) in addition to my own research. 

In choosing my medical team, I also want to make sure that my emergency responders provide me with direct access to my hospitals of choice. Recently, I spent three days with realtors narrowing down the geographic regions that feed into these hospitals. I didn’t stop there. I went knocking on the doors of the local fire departments and EMS providers for the area and even went to the hospitals to speak with the patient advocates. During this process I met some amazing people who helped me make a plan—one of whom is a paramedic who sat down with me to answer some questions and provide a few tips. 

Wear a medical alert bracelet or necklace — I do wear a medical alert bracelet. I cannot possibly list all the medical issues I have on it and have struggled with what I should capture on the front AND back of it! I do carry a typed piece of paper that is folded and in a plastic sleeve (passport folder case from Walgreens) that has the large red medical symbol on. This is carried in my wallet next to my license as well as posted on the kitchen cupboard.

But how will emergency responders know to look for this information? The EMS responder with whom I spoke said something along the lines of “see info/note in wallet” on a medical alert tag would be useful. They look for medical alert bracelets and necklaces first. They will look in wallet for ID, phone for ICE (in case of emergency) numbers, and will call the last three numbers you talked to on the assumption that one of those knows you personally. On this note in your wallet (mine is actually a full sheet of paper) you can put the additional information you need communicated: diagnosis, allergies, medications and dosages, hospital preferences, doctor contacts, etc. Make sure you update this regularly if meds change or you develop or resolve other medical issues. If you are unresponsive, this will be your “voice." Have your emergency contact person (spouse, parent, friend) also carry a copy of this information, so that if they are called by EMS they will have the same information. I know at my house, although my husband is “informed” on my medical needs, he doesn’t remember the details! This way, he has easy access to current information and can help communicate it to those who need to know.

Houston EMS also suggested “Vial of Life” (vialoflife.com). This is free. You can print forms and request house stickers to identify that you have a Vial of Life. This looks like something I will do.

I inquired about the medical alert flash drives. Are they of any use to the responders or just give false comfort to the patient? I was told they are “great," but that EMS responders don’t see them that often. Most ambulances have a laptop on board and as long as the flash drive does not require any special program to run, it can be helpful. If by chance EMS did not have access in the ambulance, the flash drive still would be helpful upon arrival to the hospital, as staff there could access the information. Some of the flash drives can accommodate test results, scans, medical reports, and other information in addition to basic emergency contact information. For a flash drive to be useful, it would need to be obvious that it is a medical alert device. EMS will still look for bracelets/necklaces first, then wallets—so a flash drive on a  key chain in the bottom of your purse may not be readily found. It needs to be visible somehow—a medical alert bracelet could include information about where the flash drive is located. 

Note: Shopping for medical alert jewelry through this link to Sticky J helps support FMD Chat. 

• Get to know EMS and EMS to Know You — Another tip from Houston EMS was to come back in to the station once I moved so that responders can write into the Emergency Response System (911) who I am, my condition and special circumstances (ie: issue with intubation with carotid FMD). If 911 were called from my home number, these notes would come up, and any first responder would be made aware of the circumstances.

I asked if it made sense to go meet the local EMS guys who would service my house and explain, in person, my diagnosis and needs (and do some teaching), which I have done in Illinois. I was told that building such a relationship with my local EMS isn't a bad idea; however, one can not always rely on the local team to be the one dispatched. If a team is tied up with another call, another district will be dispatched. 

EMS also said that knowing what kind of patients are in their area helps them keep up to date with equipment and technology. For example, my needing special intubation given my carotid FMD, helps provide EMS with a reason to get that equipment on their trucks, and knowing that my medical contact info is on a flash drive would help them justify that all vehicles had a way to connect to this information as more people may be using this technology.

• Know Where You Want To Go — I am an active person. I do not stay at home. I know there is no guarantee that if I need emergency care, I will be in an area that feeds to my hospital of choice. The EMS guys said: If you are stable, we will transport you to any hospital you want to go to. If you are not (stroke, dissection) we are taking you to the nearest hospital to stabilize you. If we know that your preference is to be in this other hospital system, we will get you there as soon as possible. Communicating hospital preferences can be done via medical alert devices such as the bracelets, paper print outs, and flash drives I have mentioned. Also in relation to being on the go, I wear a GPS beeper pendant and pay a monthly fee—think, “I’ve fallen and I can’t get up…but we know where you are.” This also gives me peace of mind, as it is part of the plan. 


This may seem overkill to some. For me, having had a stroke and being alone, I need a plan. With the plan in place, I can relax and live my life and not let this disease keep me in bondage!