Possible cure down the road???

[Ashley]

Hey @mhudakcollins

Thanks for sharing this article with us! It definitely is an interesting read and gives me hope that they are closer to figuring out how our immune system and autoimmune disorders work, but I think a lot more research is really needed before completely getting our hopes up!

[Mary Hudak-Collins]

I’m very happy to see that continued research is being done. My husband and I have always grown herbs for different ailments. Recently, he ordered me a book about foods and autoimmune diseases. It was part of a Herbal and Medicinal Preparedness Package that he purchased. If there is anything interesting, I’ll be happy to share 🙂

[Price Wooldridge]

@mhudakcollins thanks for the article. I too am celiac and developed that before LEMS. This monoclonal antibodies research is cutting edge and being investigated for use in other disorders as well. It seems like we’re getting closer to breakthrough treatments.

[Mary Hudak-Collins]

This article gave me much hope for my daughter. She just turned 24 yrs old. She was diagnosed with Celiac in 2008 after many doctors appointments and having to go out of state to get her tested correctly. All the docs around here said she just didn’t want to go to school! Crazy, right? They said the same thing a few years ago when she was at death’s door in the hospital for a week. The nurses kept saying it was her gallbladder but the U/S showed no abnormalities. On her day of discharge a doc walked in and asked us if she had had a gallbladder function test, which she hadn’t. The doc scheduled it outpatient for that following Tuesday and it showed a “dead” gallbladder. On Friday, she was having it removed.
She also has Autoimmune Cirrhosis and is taking Ursodiol which is keeping it at bay. At 21 yrs old, she had a hysterectomy because of constant bleeding and endometriosis. Unfortunately, before we finally saw a doc who would perform a hysto on someone her age the endometriosis had spread and was on her liver, spleen, and ureters. It’s just been a mess for her. From the extensive endometriosis, she developed Interstitial Hemorrhagic Cystitis in which she has to have her bladder “blown up” every 3 months under anesthesia for the rest of her life. She has been doing this now for 5 years.
Most recently, she had an EGD and was diagnosed with Gastroparesis. So, now we are reviewing diet changes. It makes it hard when she can eat certain things with the bladder issues, but can’t because of her Celiac, or what she should be eating for Celiac, she shouldn’t have because of the bladder.
My daughter has an arm’s length of diagnoses and is a challenge for any physician. She has Autism and is right on the line of knowing enough to know she is different, but yet she is unable to stick up for herself. Unfortunately, she will always need an advocate to make sure she is taken care of correctly. I guess this is why I am so assertive when dealing with physicians because over the years I have learned that if you are passive and just take their word for Gospel, then you become a statistic. I believe that we are all responsible for researching our own personal health issues and discussing what we find with our physician(s).

[Price Wooldridge]

@mhudakcollins I couldn’t agree more about not being passive. Your daughter’s medical issues are complicated as are so many with LEMS. I can’t say “be proactive” enough to people in charge of their own or a loved ones health.