LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
We would LOVE to hear from all our members on this one! There are some wonderful, helpful people that NEED our input! Before and during your diagnosis, what websites did you use to search for information? If it was something like Google, what were the key terms you searched? Were they symptoms, tests, names of diseases, etc.? If it was a more specific website (for example, webmd), what sites were they? What sites did you find helpful...or NOT helpful? There is a team of people dedicated to helping patients and families JUST LIKE US easily find the critical information we most desperately need. They need to know things like what we, as mothers, fathers, patients, etc. are typing into search engines so that they can help link those key terms with the correct websites so that it is no longer a struggle to find things like diagnostic tests, support groups like ours, doctors and hospitals that have experience with LAL Deficiency, etc. So if you could just take a few minutes and think back to where and how you looked, we would truly appreciate your input! Thank you!!!
I will post some of the things we searched on Google when Gage was sick and after his diagnosis:
Baby with distended belly
Baby vomiting and pale
Baby with enlarged spleen
Wolman's disease support group
Baby with Wolman's disease
There were a ton more. We took all of these key terms and worded them a hundred different ways to try to find new information.
I looked at the keywords, splenomegaly and hepatomegaly, got most of my information from wikipedia, some from web md and small portions from sites that were from big university medical schools. The most helpful and accurate information however came from wikipedia which described all the diseases and symptoms thereof.
Thank you so much for your input Michele!
Sharon Cundiff also looked in all the regular places, but I remember looking up "baby with enlarged liver and enlarged spleen." Also looked under "rare diseases" and "storage diseases." When we finally had diagnosis of Wolman's, the section from Wikipedia was about the only resource that came up. One of my hopes for this website is that patient families find more information on their child's disease and find it faster!
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 were:
Wolmans disease support groups
child with wolmans disease
wolmans disease treatments
I also searched wolmans disease with cities that had more possibility of having wolman's cases.