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Ireland Calling!

markandcara Message
3 Aug 2008, 10:49 AM

Hello people, Mark is my name, My partner Cara has recently been diagnosed with SCLS. We've had a challenging time recently as has everybody managing this illness. I found this site and you guys through Wikipedia. It's fantastic to hear and see other people out there sharing your experiences. It's such a rare illness that I felt we would be the only ones in this country (Ireland) possibly dealing with this. I look forward to writing and mailing and seeing what you guys have to share, hopefully we can contribute!! Mark.
aporzeca Message
3 Aug 2008, 11:34 AM

Welcome to you, Mark & Cara! I had no idea this site could be found via Wikipedia, and that it could attract someone from abroad! Check out what has been posted already under Disorder Resources and Discussion Forum, and add whatever details you care to reveal about your experience to date with SCLS. FYI, the physician with the most experience treating SCLS in Europe is Prof. Dr. Zahir Amoura, Département de Médicine Interne, Hospitalier Pitié-Salpêtrière, Paris, France, tel 01 42 17 80 03. Encourage Cara's doctors to get in touch with him, or consider going to see him in Paris for a consultation.
judithdavis3 Message
4 Aug 2008, 03:13 AM

Hi to Mark and Cara! I am on a quest to gather data about this disease to attempt to find common denominators. I am a Johns Hopkins Nurse for 30 years who happens to have been diagnosed Dec. 9th 2004 with SCLS. How long was Cara sick before she got diagnosed? How did they finally diagnose her? How often are her attacks? Is she on any meds for the SCLS? What are her symptoms during an attack? Do you have a good hospital close by? Has Cara had any complications secondary to SCLS? Do you have a good support system in place? And how are you holding up Mark? I drive my husband crazy with this disease. I always wait until midnight to go to the hospital and he loses sleep and misses work. Dr Greipp is the specialist in the USA at Mayo clionic in Rochester Minnesota. He is great and so is Dr Amoura in Paris. Blessings to both of you. Stay well! And if you can't stay well, mange SCLS wisely-NO fluid overload
markandcara Message
5 Aug 2008, 09:56 PM

Hi guys, many thanks for your replies, Judith I will reply to your request for info in the coming couple of days, it's so good to get in contact with others sharing the same challenge, and thank you both for the info on the french doctor, that could be most helpful. It's very late here in Ireland now and we're preparing for a wedding so I'll sign off but will be in touch soon. Thanks again. Mark.
markandcara Message
10 Aug 2008, 08:30 PM

Hi to you all, this is Cara. My partner Mark joined this site for us to learn more about SCLS. My attacks started suddenly in March '07 during what I thought was a bad flu. From there the attacks increased in frequency to twice a week by August '07, and they have stayed steady at that frequency since then. My GP was at a loss to diagnose it and referred me to to a general consultant here who conducted every test imaginable but was still at a loss himself. In April '08 I suffered a terrible attack and went to ER for the first time. with chronic dehydration, lacticacidosis and hypothermia, landing me in ICU. After a week of further tests a neurologist finally suggested SCLS. We had just started some salbutamol meds when I suffered another extreme attack on July 1. At least this time we knew what it was but I went downhill at a rapid rate and suffered cardiac arrest from the sudden drop in blood pressure. Aggressive rehydration and a couple of days in ICU stabilised me again and a blast of antibiotics was needed for the pneumonia I picked up en route. I am now on theophylline (400mg x 2 times per day) and salbutamol (4mg x 4 times per day) as a substitute for terbutoline. Terbutoline has been discontinued in syrup and tablet form in Ireland and the UK for commercial reasons so I am hoping to source from U.S. I have to do this through pharmacist as it's illegal to do it myself by Internet.Good news though, I haven't had an attack since that one in July. I have a strong medical team behind me, a sympathetic GP and luckily a medic as a sister. As regards triggers, I have identified none at all. I kept diaries etc but nothing emerged. I have had attacks in both stressful and relaxing environments - it was perfectly regular and predictable in its 3/4 day cycle. I am a corporate lawyer and stress is part of the gig - but I haven't noticed a connection. Sorry to rabbit on, but just thought another history from this side of the pond might interest you all. I'm well at the minute and praying, for all concerned (my lovely Mark and precious family included), that it stays that way....
jisenhour Message
12 Aug 2008, 03:45 PM

Wow..this is amazing. I was diagnosed in 2005. I've since had several minor and one major episode. I had no idea there were others with this thing. I really thank who ever set this up. It seems as if my reading time will be allocated for a few days.
aporzeca Message
13 Aug 2008, 04:48 PM

You are welcome!
jordansh Message
21 Mar 2009, 12:40 PM

I remember the feeling of being the only one in the world dealing with this illness...I will be in Ireland 4/12 till 4/19 if you would like a moment. I am the surviving spouse of a wonderful man that suffered from SCLS.
judithdavis3 Message
22 Mar 2009, 03:37 AM

Sharon-Have a GREAT time in Ireland. Is this business or pleasure? Are the kids going with you? I am being admitted to NIH tommorrow for the SCLS study. I talked to Nina, Arturo's wife, Thursday evening. He was still intubated. I just read Nights at Rodanthe but haven't seen the movie yet-the 3 guys in my house refuse to watch a chick flick. I miss talking to you.