My Name is Ashley True-Lotts My son is Bryzen Kenneth Robert Lotts: He was born January 10, 2014 At 3 Months Bryzen was diagnosed with a very serious Rare Disease called Urticaria Pigmentosa: It began causing red spots/blisters on his body, covering him literally from head to the soles of his feet! As of September: We have been traveling 3 hours to Rochester to have Bryzen seen by specialists: They did a biopsy of his spots and confirmed the diagnosis, they also drew blood, and told us the Urticaria Pigmentosa was in his blood: They are referring us to specialists in Washington DC to see the Countrys best Expert Doctors that specialize in rare diseases, they have ordered that Bryzen Has a Bone Marrow Biopsy done.. Urticaria Pigmentosa is extremely rare: they have no evidence or reason to explain as WHY, or WHAT causes it: they currently have no TREATMENT: it is so rare only 200,000 people have it: it is rare for it to become in the blood: it also can form in the main organs:: it is a mast cell deficiency: lowering the immune system: people with urticaria Pigmentosa have to have Epipens incase of Bee sings or An sort of bite: which can result in brain stroke. They become very flushed at times: they are not to be in heat: sun: I will be posting more about Bryzens condition I just wanted to cover some basic knowledge for now: This page is for my son I be Heard: This a foundation: Awareness:Hope:Faith: :love:Prayers: Understanding: Please respect this page: Please Respect my son:!
Posted on: Wed, 01 Oct 2014 07:29:13 +0000
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