But You Are So Young...

          But you are so young... words that pierce a hole right through my sternum. Yes, I am young but unfortunately chronic illnesses don't ask for ID. Yes, I am young but I know kids, young adults, adults, and seniors with chronic illnesses. Nobody tells a diabetic kid they can't be sick because they're too young! Yet we (spoonies of various illnesses) get it all the time. My passport and birth certificate concur that I am 21. I am young but anyone who has heard the snaps and cracks of putting my joints back in place before I get out of bed each morning would swear that I am 80. I am young but take more medication and supplements than my grandparents. I am young but I wake up each morning to face a monster that knows my name, my fears, and my limits. I am young but my calendar is that of a retiree: volunteering with doctors appointments and physical therapy to fill in the gaps. I am young but I have friends my age and younger fighting for their lives and few that lost their battle already. I may not look sick, or I may, but I feel sick. I feel these disease nestle into every nook and cranny of my body. I put on a smile to mask the pain and refuse to slow down for the fear that I will be eaten whole by the flames. As Plato said, "be kind, everyone you know is fighting a hard battle". While many of these comments aren't said with ill intent, they can be destructive to someone not quite back up on their feet. I suggest going with a complement not related to pain, illness, or weight for the general population. My heart broke the other day when a fellow friend with gastroparesis (stomach paralysis) told me (after losing a lot of weight do to sickness and malnourishment) her mom had told her she looks better "lighter" after she had just been talking to her mom about how she's really struggling with her GP. Pro-tip: Try crawling around in our bodies in your mind. If you were in constant pain and feeling defeated, would you want someone to tell you "you don't look sick!"? Even if with good intentions the answer would probably be no. You can always ask instead how we are doing or if we have seen any good movies recently (chances are if it is a spoonie the answer is YES...we watch a lot of Netflix... ;) ).

Harper Lee

May is EDS Awareness Month

Alright, it would be silly if I didn't post something EDS Awareness related because it is awareness month so here goes.
Here are some FAQ about Ehlers-Danlos Syndrome

• What is Ehlers-Danlos Syndrome (EDS)?
• EDS is a group of genetic connective tissue disorders (CTD) that affect your bodies ability to produce collagen. Collagen is a protein in connective tissues that acts as a glue for your body. People with EDS produce weak, faulty collagen which affects our joints, organs, blood vessels, ligaments, tendons, you get the jist. There are different subtypes based on which type of collagen the mutation is on. All types share joint laxity, easy bruising, and soft skin. There are currently six different types of EDS (newly revised): Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis, and Other. It is possible to have crossover, AKA more than one type (lucky duck...).
• How is EDS diagnosed?
• Excellent question self, EDS is a clinical diagnosis that can be confirmed with genetic testing in all but the hypermobility type. The clinical diagnosis comes in two components: the Beighton Score (asses joint hypermobility), and the newer Brighton score. (I know, it's stupidly similar names)

BRIGHTON CRITERIA

BEIGHTON SCORE (out of 9)

• Is there a cure?
• Major womp here. Not yet. But, in Baltimore they started the first EVER EDS Clinic and Research Center out of GBMC!
• What are some conditions that are comorbid (related to and commonly occur together) with EDS ?

• Dysautonomia (POTS, NCS, NMH, MSA, AD, PAF....google them, I dare you!)
• Mast Cell Activation Syndrome and Systemic Mastocytosis
• Gastroparesis and GERD
• Chiari Malformation
• Fibromyalgia
• Chronic Fatigue Syndrome
• Craniocervical Instability
• Anxiety
• Depression
• Mood Disorders
• Autism
• Mitochondrial Disease
• Multiple Sclerosis
• Lupus
• Lyme Disease
• Raynaud's Phenomenon
• Insomnia, Sleep Apnea, and Narcolepsy Oh My!
• Tethered Cord Syndrome
• Costochondritis
• Vocal Cord Dysfunction 
• Much more!
• What was the point of that?
• Because collagen is everywhere in your body, EDS effects everything. 
• What's with the zebra?

• The zebra is the mascot for rare diseases based off an old medical saying from the 1940's Dr. Theodore Woodward, "when you hear hoofbeats, think horses not zebras". This saying is used to remind medical students that it is often not a rare diagnosis. The problem is that medical zebras do exist, and it can be hard to remember that at times. The average time from start of symptoms to correct EDS diagnosis is 8-15 years. 

Some Facts About EDS!

1. 50% of EDSers can touch their tongue to their nose! 
2. EDS is currently estimated to effect 1 in every 5000 births world wide.
3. It is likely that most contortionist have EDS or another connective tissue disorder.
4. Professor Rodney Grahame, a British Rheumatologist in the field, says, "no other disease in the history of modern medicine, has been neglected in such as way as Ehlers-Danlos Syndrome.
5. Characteristics of EDS were first described in 400 BC by Hippocrates, but the syndrome was named after Edvard Ehlers of Denmark in 1901 and Henri-Alexandre Danlos of France in 1908. 
6. EDS is considered an invisible illness, even though it can have visible manifestations (extreme bruising, atrophic scarring, joint hypermobility, etc).
7. Due to the lack of resources, research, and awareness there is no cure, few treatment options and is largely based on palliative care.
8. Actress Cherylee Houston has Ehlers-Danlos Syndrome.
9. Some breeds of cats, dogs, and horses can have EDS.
10. Gary "Stretch" Turner, the man with the world's stretchiest skin has EDS. (likely did many contortionists and circus performers)

Congrats! That's all for today folks, feel free to comment if you have any questions, I'll do my best to answer them!

Jkjk...I hope :)