"witam
Moi chłopcy prawdopodobnie się zakwalifikowali do badań klinicznych w Polsce i będą dostawać lek ale kiedy to nastąpi to jeszcze nie wiem. Pytanie czy CESD wpływa na mózg bo mam bardzo nadpobudliwego chłopca druga choroba u niego…"
LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
-
Stephanie Dykes
- Female
- Wills Point, TX
- United States
- Blog Posts
- Discussions (3)
- Events
- Photos (1)
- Photo Albums
Stephanie Dykes's Page
Latest Activity
Renata Ławrynowicz left a comment for Stephanie Dykes"Dziękuję za powitanie
Stronę znalazłam przypadkowo, nie znam angielskiego bardzo rzałuję. Wiadomości tłumaczy mi komputer. Opiszę o chłopcach i diadnozie choroby jak znajoma mi przetłumaczy na angielski.
Pozdrawiam Renata Ławrynowicz"
Stephanie Dykes left a comment for Renata Ławrynowicz"Welcome to LAL Solace, we are glad you found us. If you have any questions or would like to talk. Feel free to message me anytime! Stephanie
"
Stephanie Dykes replied to Mary Pruitt's discussion Local Media"This is a great idea and I think it will really help raise awareness for LAL Solace and Lysosomal Acid Lipase diseases!!
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Stephanie Dykes replied to Mary Pruitt's discussion Where did you look? Please help!"Since Dakota was diagnosed so quickly we didn't really search for a diagnosis but searched for treatments, information and others that may have seen the disease before.
Some of the things we searched on google besides the obvious…"
Stephanie Dykes is attending Mary Pruitt's eventLAL Community Reception at New York City
September 22, 2011 from 6pm to 7pm
An event to honor the LAL Community on September 22, 2011 in New York City. Bringing together key physicians, medical professionals, patients, patient advocates and genetic counselors. Time to be announced. See More
Stephanie Dykes is attending Mary Pruitt's eventNatural History Study...We need YOUR help! at Everywhere
June 27, 2011 at 6pm to September 1, 2011 at 7pm
Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency. The information from this study is very important to the understanding of Wolman disease since it is so rare and there is no information summarized from large groups of patients available in the literature. If you are interested in having your child’s data included in this study, please contact one of the active clinical study sites or the sponsor representative listed on …See More
Stephanie Dykes replied to Julia Nable's discussion What is your experience with LAL Deficiency?"My sweet boy, Dakota, was diagnosed with wolman's disease at 7 weeks old. He touched so many lives in his short time here. He was such a sweet heart and fought such an awful battle. Our ultimate plan was to get a…"
Profile Information
- What brings you to LAL Solace?
- All, Other
- Do you or someone you know have a LAL Deficiciency Disease?
- Yes
- If yes, who is effected by LAL Deficiency?
- Child
Stephanie Dykes's Photos
Comment Wall (3 comments)
- At 7:47pm on April 14, 2011, Heather Leyhe said…
- Your welcome!
- At 10:09am on February 27, 2012, Renata Ławrynowicz said…
Dziękuję za powitanie
Stronę znalazłam przypadkowo, nie znam angielskiego bardzo rzałuję. Wiadomości tłumaczy mi komputer. Opiszę o chłopcach i diadnozie choroby jak znajoma mi przetłumaczy na angielski.
Pozdrawiam Renata Ławrynowicz
- At 4:13pm on October 2, 2012, Renata Ławrynowicz said…
witam
Moi chłopcy prawdopodobnie się zakwalifikowali do badań klinicznych w Polsce i będą dostawać lek ale kiedy to nastąpi to jeszcze nie wiem. Pytanie czy CESD wpływa na mózg bo mam bardzo nadpobudliwego chłopca druga choroba u niego stwierdzona to Zespół Aspergera.
Pozdrawiam Renata
