I have been living in the "LysoWorld" now for about six years. I started very pinpointed with one particular disorder (there are over 60 - most w/ ridiculously hard names to pronounce). It took a long time to realize that we are a part of this much larger community of Lysosomal Disease and even longer to figure out how we all fit together. I saw an amazing example of this last week at the Lysosomal Disease Network Symposium in San Diego.
I watched a Sanfilippo parent, a Hunter parent and a Niemann Pick type C parent sitting together, connecting and sharing not only experiences, but extremely important therapies.
The first question posed when the three of them sat down was, "So what's the progression of disease with your child?" And regardless of the name of the disorder or the locations where they live, each of them are experiencing the same things and same decline symptomatically.
It is my great hope that this community will offer us all the same type of connection that these three families were able to experience together. There is so much available to us as patients and parents and we can't possibly know it all! To be able to learn and teach each other is the most amazing thing...And watching it in person was an incredible experience.
It was truly LysoLife in action.
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Amazing Experience
- By StephLynStill
- Posted February 24, 2009 at 6:46 pm · 5 replies
- Shared with the public
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- By jenny-noble
- Posted March 6, 2009 at 2:48 am
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Hi Stephanie
I couldn't resist replying to your post as we were both at the same meeting.
Your post is such a breath of fresh air. How I would love to see all those with Lysosmal diseases unite rather than having seperate groups all over the world. Although our numbers are small as a large group united we have such a huge voice.
For the Lysosomal diseases that now have their therapies it would be nice to see the support and research moving onto those of us who at the present time have nothing.
Jenny Noble
Lysosomal Diseases New Zealand
Mucolipidosis Parent
- By grandgerrie
- Posted April 3, 2009 at 3:53 pm
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I have two grandsons just diagnosed with lysosomal disorder. Christian 5 has the Hunter diagnoses. Isaiah has more the Hurley. We go back to the genetics clinic next week. Since I have been staying with them since last June I have watched both of them decline in many ways. I am interested in how I can help make their lives more comfortable and if there are things I might not be doing. I do not know anyone who has seen this desease or understands it.
It really hurts when their therapist and personel at school do not try and understand that I am trying to teach the boys.
- By Chickinpic
- Posted April 9, 2009 at 12:59 pm
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This is exactly why I think a group of this nature is so very important. This family of diseases is so rare, and so devastating. There are so few people who have even heard of it, much less pronounce it (as seen in the videos). I'm so glad that I have found this group so that I may help others as well as get information myself.
The more information we can share, the better for all involved.
- By MartaPytel
- Posted April 10, 2009 at 11:46 am
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It's just great to read a positive note in here. Thank you for sharing it with us.
Marta
x
- By grandgerrie
- Posted September 6, 2009 at 5:16 pm
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It was great reading your file. I have two grandsons with Sanfilippo desease and would love to hear from someone who knows and could share information with me.
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