Why I Support HB2

There is a lot being said about North Carolina's House Bill 2 in the media right now, almost all of it negative. The question that many people are asking is why does anyone support this bill that is supposedly so horrible. Maybe I can clear up some of this.

EDS Fact 14 - It's Genetic

For many parents this is the hardest part of having a genetic disorder: the thought that you might pass it on to your children. For me I find that while this bothers me there is also a silver lining, I am going through it first. I am doing my best to help my children cope with the things that I have been through. Thankfully the medical community is slowly learning about EDS as a whole and while it can be hard to find a medical professional who knows anything about what we are going through it is not impossible. Twenty years ago when I first had problems I was completely written off as a patient. There was nothing wrong with me was what I was told. It has taken the EDS community a long time to get from that to having the few champions that we have today.

EDS Fact 13 - Vascular EDS

Vascular EDS is the most serious type of EDS and the most examined because it has more life threatening complications than the rest. Vascular EDS effects the organs, specifically the heart, more than with other types. You have an increased risk of heart problems and possible failure.

EDS Fact 12 - Pregnancy Sucks!

I know that you have heard this from about every pregnant woman you have ever ran into, but for those who have EDS pregnancy is a special hurdle. Why? Well, pregnancy hormones are meant to help get your body ready for childbirth. For normal people that makes their joints, particularly the pubic synthesis, more pliable. In order to do this our body makes our tendons more stretchy. For normal people there is very little effect that this has on your everyday life other than it might make you a little more ungainly, for us it can be a huge problem.

EDS Fact 11 - Why so Tense?

If you want to get on our good side and get us to relax, try a neck rub. As I was told once, our muscles make up for the problems that our ligaments have so the muscles are doing double duty. This means that our muscles are working overtime all the time.

EDS Fact 10 - The Velveteen Women

Your skin is so soft! You have such great skin! We get that all the time. How do we achieve that? Have a collagen disorder. Yep, that's it. While our skin may be super soft and stretchy it has it's downfalls. It can be super thin, bruise easily, tear easily, and not heal correctly. We are also known to have transparent skin, where you can easily see all the blood vessels under the skin.

EDS Fact 9 - Why we Swoon

Have you ever stood up and gotten light headed? Most of us have at one point or another. For some of us we have something called P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). What does that mean really?

EDS Fact 8 - Oh, Sleep, Where Art Tho?

There's nothing quite like lying in bed at night, wide awake, but completely exhausted. Unfortunately for some EDS sufferers this is a common occurrence. When we finally do get to sleep we don't sleep as deeply as many others do.

We're often referred to as light sleepers. You turn over in the bed next to us and we wake up. You get up out of bed in the morning and we wake up. You whisper quietly in the other room and we wake up. Believe me when I say that it's as annoying for us as it is for you.

EDS Fact 7 - What is Costochondritis?

We've all gotten a "stitch in our side" from time to time. Costochondritis is not the same at all. For any who have experienced it to say that this isn't fun is a gross understatement.

Costochondritis (kos-toe-kon-DRY-tis) is an inflammation of the cartilage that connects a rib to the breastbone (sternum). Pain caused by costochondritis might mimic that of a heart attack or other heart conditions.
Costochondritis is sometimes known as chest wall pain, costosternal syndrome or costosternal chondrodynia. Sometimes, swelling accompanies the pain (Tietze syndrome).
Costochondritis usually has no apparent cause. Treatment focuses on easing your pain while you wait for the condition to improve on its own, which can take several weeks or longer.
Costochondritis usually goes away on its own, although it might last for several weeks or longer. Treatment focuses on pain relief.

Source - http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454

Nothing quite explains what most of us experience with EDS more than the statement above "usually has no apparent cause". There is nothing quite like an incredibly sharp pain in and around your ribs with no apparent cause. The first time that you experience such a thing you immediately think heart attack. Even for us zebras, we look for horses first. After you've had this problem a few times and they tell you that you're completely healthy it can get somewhat annoying.

We are not imagining things, really we aren't, but like so much in EDS there is not much that can be done about it. Treatment of Costochondritis consists of symptom management techniques. Stretching and taking NSAIDS (Motrin IB, etc.) are the most common suggestions for treatment. If it is more severe there are other measures that doctors will take in an attempt to make us more comfortable. And you thought that we kept NSAIDS around just because we like them? More like it's because they help us get through the day!

EDS Fact 6 - Handle with Care

Ehlers-Danlos Syndrome is a world of contradictions. For some people we seem to almost become like Stretch Armstrong, we bend but never break, but for others they have the opposite problem, they break too easy.
There are several types of EDS. Hypermobile type is the most common, but one type of EDS is called vascular type. Those who have EDS Vascular Type have several unique challenges that the rest of us don't face. To help you understand I have quoted a few references about vascular type.

EDS vascular type (formerly EDS IV or EDS arterial-ecchymotic type) is primarily characterized by unusually thin, transparent skin with prominent underlying veins, particularly in the chest and abdominal areas; a susceptibility to severe bruising from minor trauma; and tissue fragility, potentially resulting in spontaneous rupture of certain membranes and tissues. For example, affected individuals may be prone to spontaneous rupture of certain mid-sized or large arteries or the intestine (bowel), leading to life-threatening complications. Because acute pain in the abdominal or flank area may indicate possible arterial or intestinal rupture, such symptoms require immediate, emergency medical attention. Individuals with EDS vascular type may also be prone to developing abnormal channels between certain arteries and veins (arteriovenous fistula, e.g., carotid-cavernous sinus fistula) and have an increased risk of weakening of arterial walls and associated bulging of certain arteries (aneurysms), such as those supplying the head and neck (carotid arteries) and within the skull (intracranial). Aneurysms may be prone to rupturing, potentially resulting in life-threatening complications. Females with EDS vascular type may also be at risk for arterial bleeding and rupture of the uterus during pregnancy as well as vaginal tearing, uterine rupture, and/or other complications during delivery. In addition, affected individuals may be prone to experiencing certain complications during and after surgical procedures, such as separation of the layers of a surgical wound (dehiscence).

Individuals with EDS vascular type may also have abnormally decreased levels of fatty tissue under skin layers (subcutaneous adipose tissue) of the hands, arms, legs, feet, and face. As a result, some affected individuals may have a characteristic facial appearance, including thin lips; a thin, pinched nose; relatively large, prominent eyes; hollow cheeks; and tight, lobeless ears. In addition, skin of the hands and feet may appear prematurely aged (acrogeria). Additional symptoms and findings associated with this EDS subtype may include a deformity in which the foot is twisted out of position at birth (clubfoot); hypermobility that may be limited to joints of the fingers and toes (digits); the early onset of varicose veins, which are unusually widened, twisted veins visible under the skin; and spontaneous rupture of muscles and tendons. In addition, some with this EDS subtype may be susceptible to abnormal accumulations of air and blood in the chest cavity (pneumohemothorax) and/or associated collapse of the lungs (pneumothorax).

Source - http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

As you can see, EDS can be very complicated and life threatening. We might look fine on the outside, but inside we may be completely falling apart. For some a simple thing as bumping into someone accidentally can be a big problem. Please be aware of your surroundings! You never know what consequences for someone else can come from you being in too big of a hurry.

EDS Fact 5 - The Pains of Being in Pain

The pain associated with EDS is not like the typical pain you experience from being hurt or sick. It has a mind of it's own. Our pain levels can vary from moment to moment let alone day to day. Most people want to leave others alone when they're sick, but what they don't think about is that we're not sick, we're just this way! There is no other way that we have ever been and there is no other way that we will be in the future. We have always been like this, we LIVE like this and we intend to keep doing so.

A good example of this is my current situation. For quite awhile I had let my muscles and tendons stay tight all the time because it was simpler. I ran into problems because of it, but I kept telling myself it was easier this way. I ignored doctor advice telling myself that they didn't understand my condition, which they still don't.

EDS Fact 4 - Disease vs. Syndrome

People seem to think that if you're in pain you have to be sick with something, this is not the case. Many people don't understand the difference between a disease and a syndrome.

NC House Bill 2 - Part 2

I was in a rush when I completed my last post about this. I used population data from the last census. I have updated my calculations to adjust for the average growth in North Carolina. 10,679,741 adjusted NC population, (average 10 year growth (20%) divided by 10 times 6 (12%) times 2010 census data plus 2010 census data). So this will update my calculations to the following:

Is North Carolina being horribly unfair to transgenders?

The facts behind North Carolina's House Bill 2:

Percentage of population that is transgender: 0.3%
Population of North Carolina: 10,679,741
Number of sex offenders in North Carolina: 65,414
Current rate of rape victimization in the US: 0.04%

Let's do the math then shall we? Number of transgender people in North Carolina (based on 0.3% of total population): 32,029. Number of registered sex offenders in North Carolina: 65,414. Percentage of  the population in North Carolina that are registered sex offenders (registered sex offenders divided into total population): 0.6%. There are twice the number of registered sex offenders!

So, in light of this information would you be concerned for your daughter, niece, mother, wife, sister, or other female relative? Look at the math, I'd say we should be!

https://en.wikipedia.org/wiki/LGBT_demographics_of_the_United_States
https://en.wikipedia.org/wiki/Demographics_of_North_Carolina
https://www.nsopw.gov/en/Registry/allregistries
https://en.wikipedia.org/wiki/Rape_in_the_United_States#Statistics

As you can see, this takes the figure from "over twice" to just twice the number of registered sex offenders as transgenders in the state. Not a life changing difference, but you know how liberals like to look for inconsistencies!

EDS Fact 3 - Zebras not Horses

There is a saying that goes 'When you hear hoof beats you think horses' which defines the medical community to the letter. They don't go looking for something unusual if there's an easier explanation. So, the question is, what happens when you don't fall within the realm of the normal?

EDS Fact 2 - Flexability and Pain

Being flexible is a good thing, right? Well, not always. There is such a thing as too flexible and with that comes certain drawbacks. Whether from injuries occurred from bending too far or from constant stress being too flexible hurts. For many of us we're in constant pain. We've even learned that there's a wide variety of pains that one can experience and that some are easier to deal with than others.

EDS Fact 1 - Invisible Illness

Invisible illnesses are hard for people to deal with for several reasons. The hardest one for others to understand is that they're invisible! There are no definite signs of inability. You don't look different on days that you feel horrible.

EDS Awareness Month

May is Ehlers Danlos Syndrome Awareness Month. Because of this I will be posting daily (I hope) with different EDS facts.

Now, the next question has to be, what is Ehlers-Danlos Syndrome? Here's where it gets tricky. There are several types of EDS and they very greatly from each other. There is a huge list of possible symptoms associated with EDS, but they're found in different combinations from person to person. The short answer is as follows: