So many POTS patients have a really hard time getting properly diagnosed. For some people, it can take years and years of wrong diagnoses before one smart doctor finally figures out they have POTS. One way we can fix that, and help future POTS patients not have to suffer without answers for so long, is to increase awareness about POTS. This helps current patients too, because if our friends and neighbors and employers know more about POTS, it can make our lives a little easier.
So I've decided to write a "how to guide" on how to get your local media to so a story about POTS. I used to do public relations before I became an attorney, and let me tell you, public relations is not rocket science. Anyone with an interesting story and a decent press release can get a story in the local newspaper. If you have POTS, you already have an interesting story... and I'm going to give you a press release. Actually, I'm going to give you a sample press release, that you should tailor to fit your own story.
SAMPLE PRESS RELEASE:
For Immediate Release
Your Contact #:
LOCAL GIRL BATTLES RARE ILLNESS THAT CAUSES HER TO FAINT WHEN SHE STANDS UP
Sally Smith, age 15, has been battling an unusual illness since January 2010. She was a very healthy, active, athletic girl before she became sick. She was the star of the local soccer team until one day when she passed out during practice. Then, for three years, she bounced from one doctor to another trying to figure out what was wrong. None of the doctors knew what she had. Some even suggested she was making it all up. Her parents knew better. "Insert quote from mom about how sick Sally really was," says Sally's mother, Jane Smith.
Finally, Dr. Super Hero, from Awesome Hospital, ran some tests and determined that Sally was suffering from a condition called Postural Orthostatic Tachycardia Syndrome ("POTS"). Dr. Hero says, "quote form Dr. Hero about POTS." POTS causes Sally's heart rate to skyrocket up to 130 bpm or more when she stands up, even if she's just standing still doing nothing. This is because Sally's autonomic nervous system is out of balance, and it does not properly regulate blood flow throughout her body. When you stand up, your body has to fight against gravity to pump your blood up towards your brain. In healthy individuals, the blood vessels in their legs will constrict, pushing more blood up towards their heart and brain. In POTS patients, quite often the autonomic nerves that control those blood vessels don't work well, so the blood ends up pooling in their legs. This causes their blood pressure to drop, and their heart to beat faster and faster to try to keep the blood pumping to their brain. If the heart can't keep up, some POTS patients, like Sally, end up fainting quite often. POTS also causes (list 3 or 4 of your worst symptoms), and other problems as well. Doctors say that patients living with POTS have a quality of life similar to someone living with congestive heart failure.
At least 80% of POTS patients are women, and many are young and in good health when they first become sick with POTS. Researchers at Mayo Clinic estimate that 1 in every 100 teenagers will develop POTS, so even though not many people have heard of it, it is not that uncommon.
Sally says she doesn't want other patients to have to go through what she went through. "I want people to know about POTS so the next time that someone has it, it doesn't take them three years to figure it out."
Sally's family holds out hope that she will get better. About half of the teenagers who develop POTS will recover by the time they are in their early 20s. Sally has to take numerous medications to help her function on a daily basis, and she goes to to physical therapy two times a week and exercises on a special machine at home everyday. "I know I can beat this, but it may take a long time," says Sally.
Obviously, you will edit this to reflect your specific situation. A press release should be no longer than 1 page. You aren't trying to give them every detail of the story. Just enough so they will be interested and want to ask you more questions. Then fax this or e-mail it to your local newspapers and TV stations. You can even try sending it to the larger networks and newspapers, but chances are you will have better luck with the local paper and TV stations.
If any of the reporters are interested in your story, they are going to call the number you gave them, and you should be ready to give them an interview very soon. Reporters are always working "on deadline." So if they call you on a Tuesday morning, they may want to interview you on Tuesday afternoon, write the story on Wednesday and publish the paper on Thursday morning. They will probably want a photo of you. I suggest a photo of you in the family living room on sitting or reclining on the couch. Brush your hair and get out of your PJs, but don't get all dolled up like you are going to Glamour Shots in the mall. If you have children, or if you are young, you may want your kids/parents in the photo with you.
Before your interview, you may want to write down a few important points that you want to cover. What would you tell the world about POTS if you had the chance - because this IS your chance. Just be yourself during the interview. If you have stuff you want to tell the reporter, but you don't want it put in the paper, you can ask them if you can give them some information "off the record." If they say yes, then you can tell them your off the record info. Be sure to tell them when you are ready to go on the record again.
The most important things to remember when dealing with the media are: (1) always be truthful - you will lose all credibility and look like a fool if you make something up or lie, and (2) be concise and think of what their readers will want to hear about. No need to tell the reporter that you have bloody stool - they aren't going to put that in the paper and you wouldn't want to read that while enjoying your Saturday morning coffee anyway.
If you don't feel confident enough to do this yourself, ask your doctor's office if they will help you raise awareness about POTS. Many times, especially if you doctor is associated with a larger hospital or a university, the hospital is always looking for patient stories to present to the media, to help improve the hospital's reputation. The hospital or university usually has a PR professional who can draft a press release and contact the reporters and arrange for the interview.
And just keep in mind that anyone may be reading your story or watching it on TV - so don't say anything defamatory about doctors who mistreated you. If you want to bad mouth them, fine, but I would suggest not naming their names, or you may end up getting sued. I would also be careful about what you say if you are applying for Social Security or another form of disability. If you tell the reporter than on your good days you go out dancing with your friends, disability insurers will use that against you. Also keep in mind that your currently employer and FUTURE employers will be able to read this, now that everything is on the internet. Some companies research candidates for hire, and you never know if that could hurt you 10 or 15 years down the road. It's illegal to discriminate based on a current or former disability, but it still happens all the time.
Here are a few links to newspaper stories on POTS patients:
Ailment Can Steal Youth From the Young -New York Times, October 17, 2011
Rare Disease Makes Caledonia Girl, Former Ballet Dancer, Faint When She Stands Up - Grand Rapids Press, December 5, 2010
One year checkup: Former Ballet Dancer with Rare Disease Still Growing Stronger - Grand Rapid Press, November 9, 2011
If you get a newspaper or TV story out of this, please let me know!