Rare Disease Awareness Day 2013

It’s been a while since I last wrote and life has been hectic! I went back to work after 9 weeks off and 8 weeks of maternity leave. I wish more than anything that I could have afforded to take more time off, and my amazing husband encouraged me to do it anyway, but I just decided to bite the bullet and go back now. I have been missing my little man like CRAZY, so being home with him today is so nice. I really needed this. I’ve been continuing with my physical therapy, going from two days a week to one day a week. I thought that maybe this would make it a bit easier on my body, but it has actually made it harder… especially because I don’t always have time to do my exercises at home. So, yesterday I got my butt kicked for sure! There have definitely been some adverse effects on my body as a result, but I’m trying to keep in mind that pain like this can mean that more and more weakness is leaving my body. It’s not easy continuing to think that way though. It’s especially hard when it’s hard to pick up, hold, and/or play with my little booger. Honestly, today, the pain meds are really barely touching it. So, I’m trying to take it a little bit easy, but I do have some catching up to do around the house. Fortunately, I have the best husband ever. Last night, after I got the little man to bed, the hubby sat me down and told me that I really need to delegate to him more at home; he does want to help, but I just keep trying to do all that I was doing while I was on maternity leave. Only now, I’m trying to do it all after I’ve also worked. Fortunately, I am only working part time, but that still leave a WHOLE lot of time to get stuff done and spend time with C after all is said and done. So today I’m playing catch up, but tomorrow we’re gonna tag team it!

Now… onto all thing EDS and POTS, etc…

February 25th was Rare Disease Awareness Day for those of you who didn’t know. And even the White House issued a statement!

I found this encouraging. It’s nice to have even small recognition.

In light of Rare Disease Awareness Day, I would like to talk about SSD. Somatic Symptoms Disorders. This is a group of diagnoses that are scheduled to be in the new version of the DSM. (DSM-V) If you don’t know what the DSM is, it is a diagnostic manual used mainly by the APA (American Psychological Association) and the DSM-V has been in the works for years now. Well, the jist is that this new addition to the DSM can and will make it harder for people who are truly suffering from chronic pain or an unknown/rare condition that causes chronic pain to actually be properly diagnosed. The actual goal is that this new criteria will actually make it easier for doctors to understand diagnostic criteria for mental disorders, versus a serious physical problem. However, it is my opinion that this will simply give some of those lazier doctors out there an excuse to brush off problematic and symptomatic patients. As someone who was labeled to have a hypochondriacal neuroses, this whole situation makes me very nervous for medical zebras out there.

All of that may have been a bit confusing, and honestly, the whole thing kind of is confusing. This article might explain everything a little better:


Does that make a little more sense? Do you see why I am so nervous? I’m sure there are several of you out there who have been brushed off by doc for this reason or that. I, myself have also even been told that I’m just depressed, or that I have anxiety and depression. This isn’t fun! Especially when you know that something isn’t right with your body. I’m sure that sometimes there are some instances when SSD might actually be the appropriate diagnosis. However, I truly believe that “rare” diseases/disorders, such as POTS and EDS aren’t really all that rare. I think that they are simply under- or misdiagnosed.

A lot of times, I think about it like ASD (Autism Spectrum Disorder), Asperger’s, and any other type of Autism. Years and years ago, it was thought to be incredibly rare. Now, with more and more diagnoses of Autism, people have started to look to several things to blame for the seemingly more frequent occurrence of Autism, such as vaccinations, nutrition during pregnancy, nutrition in the child after birth, and so much more. But has anyone ever stopped to think that we simply know more now? We know how to identify Autism now. In fact, we know how to start recognizing signs of Autism in younger and younger children. This doesn’t mean that Autism is actually becoming more and more frequent in children… it is actually just being identified more effectively. Before it was identifiable, folks who actually had Autism would have been diagnosed simply as “mentally ill”.

I believe that in years to come, the same could ring true for POTS, EDS, and so many other conditions that are seemingly “rare”. Maybe, just maybe, the diagnosis is the thing that is actually rare.

Well, that’s my spiel for the day. I hope you all have a wonderful weekend and that I’ve left you with something to think about until I post again!

Zebra hugs and love!

Ashley 🙂