Anthony Sedlak

[Give My Daughter the Shot!]

I was just thinking… Sad. His family said that he died of an undiagnosed medical condition. I wonder how many people die of EDS IV or Marfans that has not been diagnosed. I’m not sure why his passing made me think of this.

BTW, does anyone know if EDS ever cross types? Do diff types skip generations? My mom died of organ rupture in her twenties. Her grandfather died young also. Her mother lived awhile but could barely even move and a lot of characteristics I now recognize (hindsight being 20/20).

Anyway, does it skip generations??? Did my mom just have random organ rupture? Is there anything to it that the females on my mothers side have had serious issues in the time following childbirth. Two were temporarily paralyzed from waist down (which eventually resolved).

Strange coincidences.

How many medical conditions can just take you out in a snap?? Lots?? I spose so, huh?

[Barbara]

Yes I believe the divisions between EDS types is somewhat ‘fuzzy edged’. I have been diagnosed EDS III, though I have traits of the vascular type (type IV), I’m awaiting a geneticist appointment to confirm one way or the other.

Regarding whether EDS skips generations, let me say that my mum had the thumbs touching arms ability but I don’t, she also had the flat feet and heart murmur. I only have minimal bendiness (knees mainly), yet my children, certainly the girls are quite bendy, especially their hands. I suppose we all inherit varying degrees of it.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.

[stryderslist2]

I don’t know that it skips generations but it shows up differently in each generation. I do not have the severity that my son has, although I have had my esophagus ruptured and knee surgery twice-my grandma died of a aneurysm and my uncles have all had their stomachs ruptured, on that same side. But no one is as hypermobile as my son, not even me and I’m pretty hypermobile. We would have never connected it to one thing though. The Dr at Shriners we just saw said the same exact thing: it’s just different in everyone-especially if you hadn’t heard of it before, you don’t look for the connections.

[Give My Daughter the Shot!]

Thanks for that. I, too, see variations (even between myself and my affected children). My mother and siblings. My maternal grandmother and siblings.

Question: If I am hypermobility type, could my mother have had vascular?? Do all generations have exact same type as diasnosis?

[martiz]

Thanks for that. I, too, see variations (even between myself and my affected children). My mother and siblings. My maternal grandmother and siblings.

Question: If I am hypermobility type, could my mother have had vascular?? Do all generations have exact same type as diasnosis?

The EDS type runs true in families – if your grandmother had vascular, you will not be hypermobile. While the types run true, there is overlap so if you grandmother had vascular, you will have vascular type but you may have some hypermobile joints. There is overlap between the symptoms but the type runs true since it is genetic. It is possible to have two types (one inherited from dad and another type inherited from mom). So, no to your first question and yes, to answer your second question.

All EDS types should be tested for vascular issues (aortic dissection) due to the possible overlap.

All of this is per Dr. Dhar – Adult geneticist at Baylor in Houston.

HTH,
Marti

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