I was very excited to find this website as I've not meet anyone else who has been diagnosed with SCLS and it's great to be able to share experiences. I actually am being followed by a pulmonologist (Dr. Mickman) at North Memorial in Minneapolis. I'm fortunate enough to live just 3 miles from a level one trauma center so when I do have severe attacks it can be handled very quickly. I was not aware of Dr. Greipp at Mayo until just yesterday but I am certainly going to consider contacting them now. I've not been able to pinpoint any triggers for my attacks except for stress. The problem is that I'm a single mom of three daughters and an attorney so my daily stress level is fairly high. This past fall when I returned to work after my baby was born I was having attacks every week or two - I could tell that it was when I was under more stress and very sleep deprived. I did read an article that suggested that allergens could also trigger attacks, does anyone have more information about that?? We moved into a home that is in a development just yards from a cement factory and the levels of lime dust don't allow us to open the windows even. Many of the homeowners in our development have developed respiratory illnesses and I've been wondering lately if this could have triggered some of my attacks.
I actually am three hours from my immediate family so when I have severe attacks I have to head to the hospital with my daughters in tow until someone can come and pick them up. I'm lucky enough to have wonderful neighbors that are always willing to help out when they can too...it's so important to have a strong support system! At 23 I was diagnosed with Chron's disease and had several surgeries to remove my large intestine and portions of my small intestine, so living with a chronic illness has become a way of life for me. I've been medication free with the Chron's for 12 years now. I don't currently take any medications for SCLS, my doctor just plans to treat the severe attacks. Is it common to be on medication for this?? There is so much I don't know yet about SCLS. Three weeks ago I was diagnosed with Rheumatoid arthritis and was put on prednisone for that, but I'm weaning off now and am down to 5mg daily. The only thing I'm taking now is a low anti-rheumatic drug. I'm very fortunate to not be on many medications.
When I have more minor attacks I just hydrate orally at home, moderate attacks I go to the ER for IV fluids and severe attacks I get admitted to ICU with a central line for fluids and antibiotics.