Suppose you were enjoying a cuppa coffee and conversation with a 35 year old female friend, and she suddenly began to feel nauseous, clammy and felt pain in her back. Would you wait it out? Take her home? Call 9-1-1?
Few of us would know how to react because we don't expect young people to suddenly exhibit those kinds of symptoms.
Among the last things we would conclude was that she was having a heart attack. Yet - dozens (or hundreds?) of 30-something women do suffer heart attacks each year. Some are diagnosed with SCAD - Spontaneous Coronary Artery Dissection.
But those very low numbers of SCAD patients also indicate something else. Dozens, or hundreds, or even thousands of people who share any rare diagnosis (if they can even get a diagnosis to begin with) aren't usually enough to interest researchers to develop treatments for them. Why? Because researchers, or perhaps more to the point, pharmaceutical companies, want to put their investment of time and money into solving medical problems for big numbers of people. That's where the most bang is for the buck. Follow the money.
But what if you are one of the people who has one of these rare diseases? What if you are only one of a few people who suffers from any given disease or condition? How can you get more information, or share your story, or find help?
The SCAD Ladies are a group of women, all of whom suffered heart attacks or some sort of frightening heart-related event while very young - and who survived surgery or some sort of treatment. Each was left wondering - Now What? Knowing their conditions were very rare, finding no one in their own social circles to talk to....
So they went online. They input keywords like "heart attack" and "SCAD" and eventually found each other in a forum at Inspire... and they began to share their stories and experiences. They support each other, they help newbies who find them, they mourn the loss of some of their members. In short, they serve as each others' support systems from across the globe - the United States, Australia, New Zealand, Sweden - dozens of women. Their numbers increase every time someone new finds them. Of course, that's not very often.
The support might have been enough - except that one of the ladies, Katherine, decided to try to take it a step further. She got in touch with the Mayo Clinic and convinced them that they could be researching and helping these women. Today, Katherine and almost 70 other women are working with the Mayo Clinic to advance what is known about SCAD and hopefully to find treatments, if not a cure.
SCAD is a very rare disease. That means a number of things to us empowered patients. First, it means it's difficult to diagnose. Second it means that treatment isn't truly defined. Third, it means that it's difficult to find any researchers who can improve either the first or second point.
But social media - connections through online forums, Facebook, Twitter or other online ways to connect - is changing all that. The SCAD Ladies have shown how vast and important those changes can be. They have the attention of people who can help them, all because they organized themselves and are willing to share information.
If you have unusual symptoms, have been diagnosed with a rare disease, or can't get diagnosed, or even think you have been misdiagnosed, then you owe it to yourself to find a other patients who share your symptoms and experiences, too. If what you have is a rare disease, then there is very little chance you will find those others in your local area - you will have to reach out online.
The web is what makes the entire world local. Is it time for you to join in?
• Read the report The SCAD Ladies Stand Up
• Learn more about determining whether you have a rare disease
• Find out what to do if you can't get a diagnosis
• Begin participating in online support groups or other social media to find other patients with your symptoms or diagnosis
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Agree? Disagree?
Share your experience or join the conversation!
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Hi Trisha,
As one of the “SCAD Ladies” and Katherine’s co-instigator, let me say THANK YOU for covering this story. It wouldn’t have been possible without WomenHeart: the National Coalition for Women With Heart Disease — Katherine and I, and the other SCAD survivors, first met, and still do meet, and organize, on WomenHeart’s online support forum.
Just a couple of quick notes. You say that, “The SCAD Ladies are a group of women, all of whom suffered heart attacks or some sort of frightening heart-related event while very young…” This makes it sound like we all have different types of heart problems and are only really united by our age.
Instead, what unites us is the SCAD itself–spontaneous coronary artery dissection. We all had a dissection. The average age of SCAD patients is 42. I was 40 when I had mine, Katherine was 38. Some are younger, a few are older. Seventy percent of SCADs happen in women, and around 30 percent of those happen to women who are either pregnant or have just given birth. Others, like mine, have no known cause.
There are only a few thousand SCADs in the US every year, and around half of the people who have them die before receiving medical care. So indeed, we’re a pretty small group.
But now we know that a group of patients with a rare disorder can indeed band together using the Internet, and together we can effect change, and get research done, and maybe our grandchildren will never have to hear, “This is what happened to you, we don’t know why.”
Thanks again for reporting on our story.
Hi Tricia,
Thanks for the coverage on SCAD. I too am a SCAD Lady…youngish for a heart attack…totally healthy…no heart disease…athletic…. and am a part of the study going on at Mayo clinic thanks to the Heart Sisters. I write a food blog (I am a chef, culinary instructor and food photographer) and I posted my SCAD story on my blog, FoodFIX, just a few days after it happened. Read it here: http://foodfixme.com/peanut-butter-pie
Though rare, I think it happens more than is currently being recorded…and so many of these go undiagnosed because of the high fatality rate…it’s a good thing to raise awareness so that women presenting with these unlikely symptoms can get taken seriously at ERs around the country. I myself got sent home from the ER only to have another attack hours later…
So thanks again for raising awareness!
Rachel Willen
I am 36. I presented to the ER on Friday, May 4th because I had an overwhelming feeling of nauseau and then pressure in my chest. The EKG looked normal in the ER and they almost let me go home. Thankfully, they ran another blood test which revealed that the enzyme indicative of a heart attack was becoming elevated. A catheterization procedure revealed that I have SCAD. The recommended treatment was to give me high dose heparin and high dose anticoagulant to try to clean up the artery (and possibly then put in a stent). It was too difficult for the surgeon to determine where to put the stent the first time he was in there. I ended up with a bleed from the catheterization port and was moved to ICU. A few days later, another catheterization was done through my wrist. The artery looked like it was “healing”. No treatment was done other than putting me on blood pressure, cholesterol, etc. medications even though I did not have high blood pressure or cholesterol problems before. It has been recommended that I attend cardiac rehab. I had a nurse practictioner tell me I have coronary artery disease, which clearly is not the case as there was no plaque build up. Although I am thankful to be alive and I certainly have a new outlook on life, it is difficult for me to trust what practitioners are telling me because there does not appear to be a lot known about the condition. Will the dissection truly “heal” or will the tear reappear without any of us knowing it? I am told there is a less than 10% chance that it will come back, but I don’t think this is based on any concrete data (just my doctor’s hunch). I know I have to have faith in the Lord that he will protect me, and I do. I just can’t help to be scared. This is all very new. I just arrived home from the hospital Saturday, May 12, 2012.