LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
I have been away for a while but am back! I have been sick and we are trying to find out what is wrong. Besides my liver and spleen being enlarged, I now have a small nodule on my thyroid, I have extreme pain on my abdomin (lower quadrant) I have weakness in my right leg and my right arm and rely on a walker. I can only walk short distances and rely on my husband to help me. I have PT 3xs a week at home as well as a nurses aid. I have never found myself in this bad of shape. I thought I would just get another surgery and be on my way but it isn't so this time. Has anyone else gone through this? I am in the care of my liver doctor and a neurologist. My liver doctor Dr. Basu said that Yale University Hospital in CT is interested in my case and wants to take me there for a special liver biopsy to determin the state of my liver and see how many years till cirrhosis kicks in. My doctor even said I can't go back to work.He thinks I may have abdominal ishcemia or something. I was hospitalized in Mt. Sinai in Manhattan for 12 days and they can't seem to pinpoint the problem. But they did see that my leg and my arm is weak. I am on Short term disability from work at the moment and have had to apply for Social Security Disability, a city Disability parking permit and for Access-a-ride for when my husband is not available. Life sure does change at the drop of a hat. I wish I could walk again and be free to run with my children. I wish I could stop being poked and prodded. This disease is mine and mine alone, the way I think of it, my disease makes me special. I can help others in the furture with the tests I have and I will save a life one day.I want to thank you all for our support. It feels great to be able to come to a group and talk about something that we can all relate to. Best wishes for all!
God Bless, Melissa
I am so sorry to hear you have been having such a hard time. If you don't mind, I will contact our three medical advisors with your story and see if there is anything at all they can do. Hang in there! I will do whatever I can to help!
Thank you so much Mary! God bless you for all that you do for us!