LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

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Discussions	Replies	Latest Activity
New Year What do you hope to see happen in the LAL Community in 2012? How can we reach more patients and families? Started by Mary Pruitt	0	Dec 29, 2011
Living with LAL Deficiency....now what? I am 31 years old and I found out I had LAL Deficiency on November 15, 2011. After years of various types of surgeries (gallbladder, appen… Started by Melissa Aguilar	3	Dec 15, 2011 Reply by Melissa Aguilar
Misdiagnosed Were any of you or your children misdiagnosed while waiting for the LAL Deficiency diagnosis? Gage's first diagnosis was Hirschsprung disea… Started by Mary Pruitt	0	Dec 15, 2011
Diagnosis If you feel comfortable sharing, we would love to know how you or your family member was diagnosed with LAL Deficiency...either Wolman's Di… Started by Mary Pruitt	6	Nov 30, 2011 Reply by Melissa Aguilar
What is your experience with LAL Deficiency? We look forward to hearing your story. Started by Julia N	7	Nov 30, 2011 Reply by Melissa Aguilar
Thanksgiving How has LALDeficiency (Wolman's or CESD) changed the way you celebrate the holidays? Have you had to make special meal plans because of it?… Started by Mary Pruitt	0	Nov 7, 2011
Rare Disease Day 2012 The last day of February each year is designated Rare Disease Day. It is recognized in the United States, Europe and other places around th… Started by Mary Pruitt	0	Aug 10, 2011
Study Participants Needed Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency. The information from this study is very… Started by Mary Pruitt	0	Jun 20, 2011
Roadblocks What roadblocks did you encounter trying to find a diagnosis? Started by Mary Pruitt	0	Jun 14, 2011
How is everyone doing? Just wondering what the past few weeks has brought to your lives? Started by Mary Pruitt	1	May 10, 2011 Reply by Mary Pruitt