Frequently Asked Questions:

Do you still like your Purple Bed?

  • I have had my Purple Bed for one year now, and I can say with all honesty that I am just as thrilled as I was the day it arrived. I don’t work for them and don’t get paid to promote them, so it isn’t a sales pitch…I just have found the bed to help me be more comfortable at night and to ease the pain a bit while sleeping. Pressure is very hard on my body, and typical coil spring mattresses have always given me pain and even bruising if I lay on my side, but I can lay however I want on my bed now without any pressure pain. I still have insomnia at times, I still lay awake in pain at night sometimes, but I don’t attribute it to my bed anymore. If anything, when I am hurting, I want to run to my bed and curl up in the cloud of softness. And, Boyfriend loves it, too. He says that he has a hard time waking up in the morning because he is sleeping so soundly and comfortably in the bed. So…yep! I love it. Click here to read my post about the PurpleBeds.

Do you recommend any doctors, in any states?

  • The following doctors have been wonderful in helping me wade through the waters of EDS. They are not specialists (most of them) and do not specifically treat EDS, but they are willing to learn and have been kind and patient. If you live in any of these cities, I would look them up.
    • Reno, Nevada:
      • Primary Care Physician: Dr. Michelle Kiser (Sees several EDSers. She’s just wonderful! I was the most sad leaving her when I moved away.)
      • Chiropractor: Dr. Tony Jensen (ProAdjuster)
      • Pain management: Dr. Ali Narizi (AMAZING!)
      • Pain Management: Dr. Jonathan Burns (He didn’t know anything about EDS but was so wonderful and willing to work with me to find relief, listened to all of my concerns, tried many different treatments and was so kind.)
      • Ophthalmologist: Dr. Pritchett (he sees several EDS patients)
    • Hampton Roads, Virginia:
      • Atlantic Orthopaedic Specialists: (All very helpful. Didn’t know much about EDS, but provided me with some of the best splints I have ever had. Also, the hand therapist there is the one who worked with my tendonitis, hand pain, and got me set up with the Silver Ring Splints.)
      • Endocrinologist: Dr. Supna Lowery (She has since moved to Northern Virginia, in the Alexandria area, but she is great at working to treat POTS and also to do bone density screenings/care.)
    • Baltimore, MD:
      • Rheumatology: Dr. Ashu Mehta (Didn’t treat EDS, but he was the first doctor to look at me, believe something was wrong, get out medical books and scour them with me until we had an idea of what was wrong. He then sent me to Dr. Levy at Johns Hopkins for diagnosis.)
      • Primary Care Physician: Dr. Clair Francomano (I have never been treated by her, but I have heard nothing but amazing things from her patients. She works with lots of EDSers. She spoke at the EDNF conference in 2010 and was extremely knowledgeable and seemed down-to-earth.)
    • Chicago, IL:
      • Genetics: The Amazing Dr. Brad Tinkle. I will write more about him after I become his patient later this week, but until then, I have read his books and listened to his presentations at the EDNF conference in 2010, and I find him to be the most knowledgeable person on the planet when it comes to EDS.

Do you moderate our comments on the blog?

  • I am a firm believer in free speech, and openly post most comments left on blog posts. I will, however, not allow spam. If you post spam, you will not be allowed to be a part of this gathering space.

How do I contact you?

Do you have any medical training?

  • No, I do not. Now the legal jargon: Everything on this blog is just my opinion and written from my own personal experience. I will not be held accountable for anything you choose to do with this information. In addition, if the content is from a guest blogger, I will not be held accountable for their information or what you choose to do with it. This blog is not intended to replace medical advice given to you by a trained professional.

I’m an EDSer and am thinking about getting a tattoo. Any advice?

  • I have Type 3, aka Hypermobile EDS, so I am only experienced with my skin; everyone’s is different. I know lots of EDSers with tattoos, but most of them have Hypermobile type. I would be extremely hesitant to get a tattoo, personally, if I had Classical type. As for healing, I actually had no problems, which was unexpected, since I tend to have longer healing times than the average person. Piercings are different, though. All of mine have taken a very long time to heal, and some, after years, still get infected often.

I think I have EDS. What’s the benefit of getting a diagnosis?

  • For me, it was hope. Admittedly, it was sort of a double-edged sword, finding out I had this illness that has no cure was rather tough, but having an answer for what I had been enduring for years felt like a big weight had been lifted off my shoulders. Having a name for my illness changed my life. I could now seek treatment for an actual thing with a name, not just something I “made up in my head”. Doctors took me a more seriously, though a lot still had no idea what to do with me. I got referrals to specialists that made more sense than just random doctors I was picking out of the phone book in desperation. It took all of my strange symptoms and put them under the same umbrella. And, for me, one of the most important things, I found out I wasn’t alone. I became part of a community, part of something greater than me, and it led me to become a big advocate for awareness. I am now in charge of my body and my care, I have learned to advocate for myself, learned to speak up when doctors aren’t listening. I have been able to help others by spreading information around so more and more people can be diagnosed, so this invisible illness becomes more visible.

I want to be a guest writer on your blog. What do I need to do?

  • Send me your info on the Contact Form. Include what you would like to write about and why, and what your credentials are, however large or small. It doesn’t matter whether you are an elementary school kid or a doctor trying to help, just give me an idea of what you are about.

What medicines and supplements do you take?

Medication List

Where can I buy Silver Ring Splints?

      • There’s an entire post on the splints that lists the companies that make them, how to contact them, and even how to get your insurance to pay for them (or at least try). Visit the post.

Where can I buy all the assistive devices you mention on the blog?

      •  There is a Store tab on the site. Find all of the items in one location, with safe and secure buying through Amazon (and Amazon’s great prices, too!). If you would prefer to go directly to the store, click here.

What kind of doctor treats EDS?

      • There really isn’t an “EDS doctor.” There are a few doctors across the country that specialize in EDS, but that’s really the extent of it. The key to finding a good doctor is seeking out someone who will listen to you and is willing to learn, not let their ego get in the way of helping you. You are your biggest helper. Educate yourself and then educate your doctors. There really isn’t an easier answer, even though I wish there was. I have listed some doctors I worked with on this page, but chances are, you aren’t in one of the cities. Be your own advocate. Purchase books, pamphlets, make your own checklists, print stuff off of the internet, come in to your visits fully prepared with copies of all of it for the doctors, and don’t stop until you find someone that really puts your care above everything else. Good luck. We’re all in this together, and the more doctors that learn about EDS and POTS, the more effective and available the treatment options will be. Maybe one day there will even be a cure!

Why are EDSers called zebras?

      • According to Wikipedia, Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept. The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Overuse of the Zebra Aphorism has led to unwarranted skepticism regarding acceptance of a legitimate rare diagnosis.

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