BENDY BOY...

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Why The Zebra? 

When you have as many diagnoses as Caden, you have a lot of Awareness Months. In March we "celebrated" Cerebral Palsy Awareness Month, we were a part of Rare Disease Day, in October we honor Dysautonomia Awareness Month, but May is a particularly important month for Caden. May is Ehlers-Danlos Awareness Month and we believe it is the Ehlers-Danlos, and the many symptoms of this genetic disorder, that have affected Caden's quality of life most.

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Symptoms of EDS

So what is Ehlers-Danlos, you may be asking? To be honest with you, until about three years ago I had never heard of it. If it hadn't been for a urologist who suggested that Caden's brother, Ethan, may have the disorder, we may have never even thought to look into it for Caden.

Ehlers-Danlos is a connective tissue disorder which affects about one out of every 5000 people. It genetically affects the collagen of the body. Collagen is the "glue" which holds the tissues of the body together. In fact, 80% of our body is made up of collagen, so if there is a defect in the make up of the collagen, a person's entire body is affected. Skin, muscle, ligaments, blood vessels and every other tissue of the body is weakened and defective because of EDS.

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Classifications of EDS

Caden has been diagnosed with Type III - Hypermobility

Three years ago, and after two failed inguinal hernia repairs for Caden's brother, Ethan, a urologist suggested that maybe Ethan had a connective tissue disorder which was not allowing the tissue to heal properly. We decided to take both boys, since they are identical twins, to a geneticist. Because the boys were less than a year old, she did not feel they had Ehlers-Danlos, but rather were flexible as most babies often are. Fortunately, the third attempt at Ethan's hernia repair was successful and because of this we put the notion of the boys having a connective tissue disorder out of our heads.

This was until about this time last year when we noticed Caden was regressing. Prior to his regression he had begun to take a few supported steps, had a small eight word slurred vocabulary and was beginning to army crawl; all very delayed milestones but being he has Cerebral Palsy, they were milestones nonetheless. What we didn't understand was why he was regressing and had all of a sudden, lost these skills. Cerebral Palsy is a non progressive disability and children with CP will make little or no progress but should never lose milestones gained. We began looking into what else could possibly be going on with Caden and that is when Ehlers-Danlos popped back up in the picture.

We presented this idea again last year to the geneticist who originally looked at the boys back in 2011. She was still not convinced Caden had a connective tissue disorder. Where it becomes difficult to diagnose the type of EDS we felt Caden has is that there is no genetic test for it and it is simply diagnosed based on family history and symptoms. One month later, we had Caden transferred to Cincinnati Children's Hospital where one of the best EDS geneticists in the country finally did diagnose Caden with Ehlers-Danlos Hypermobility. In fact, the letter she wrote states that she is without a doubt convinced he has EDS. EDS Hypermobility affects about one in every 10,000 to 15,000. Apparently I have EDS Hypermobility but am fortunate in that it has not dramatically affected my quality of life. But for Caden, it has. Caden has many symptoms of EDS including a blood disorder, capillary fragility, Postural Orthostatic Tachycardia Syndrome, Strabismus of the eyes, brittle bones, hypermobile joints, Neuropathy, easy bruising, Hypotonia, fragile skin, poor wound healing, Gastroparesis, Irritable Bowel Syndrome, Cranial Instability and Dysautonomia. (Click on any of the bold terms to better understand what they are.)

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EDS Facts

Now you would think we would have been devastated by this news, when in fact we were relieved. EDS explained many of these symptoms Caden was having and it put a name to an otherwise undiagnosed little boy. It tied most everything up into a "neat" little package. Of course, there is no cure for EDS and all one can really do is try to manage each of the symptoms, but at least we had some idea of where to start.

One year later and still many doctors are still not convinced Caden has EDS, but we are. EDS does not explain everything that is going on and we are still waiting to see what the genetic study shows, but we have begun the process of finding doctors who are experts in this rare disorder and we are working towards finding ways to best manage Caden's care.

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May is EDS Awareness Month

So to honor all those suffering from Ehlers-Danlos, I would like to dedicate this post to you.