Wendy R Kalivoda
Dunnellon, Fl
About me
Mother of four children. My oldest boy is actually my nephew, I have raised him since birth due to my sister passing away in child birth. Doctors told us they thought lupus was the cause, turns out after 13 years my son had a rare disorder come up I was familiar with that my sister also dealt with but never diagnosed. I researched the condition & found it was associated with another rare disorder called Ehlers-Danlos type IV. The description fit my sister & her son to a T, so I ordered doctors to test my son (nephew) for both disorders & they came back positive. This is a fatal type with a life expectancy of 48 years, although my sister died at the young age of 26. It is not uncommon in the EDS community to hear that this type passes away earlier than 48 just due to aneurysms or dissections, organs ruptures. I have & continue to volunteer for EDS Network CARES, Inc. to help raise the funds for our research mouse model project, advocate & to raise awareness for this Rare disorder.
Why I participate in Medpedia
As always, trying to educate the public or medical community. Help other families dealing with the same issues.....support, encouragement, updates, friendship and groups.
Contact
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Disclosure or Conflict of Interest
Wendy R Kalivoda has nothing to disclose
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