Membership in this SCLS virtual community has now reached 100, which is quite an accomplishment considering that SCLS is exceedingly rare, this communication vehicle became available just 2 years ago, most of the world's inhabitants do not read English, and not everyone has access to or uses the Internet, or has discovered or bothered to join this community.
To celebrate this milestone, I decided to make a list of our membership and to classify it using whatever everybody has posted publicly on their profile page or in a sample of discussion posts. (In case you were wondering, no, I do not have any access to any non-public information, such as your email address.)
One thing I found out is that there are many members who have not updated their profile page for a long time, or have yet to provide essential information such as gender, location, date of birth, date of first suspected episode, and medications tried or being used. Therefore, may I take this opportunity to appeal to everyone to please complete and update your profile page, and if you do, please let me know by writing to me at aporzeca@american.edu, so I may update this post.
Here is a profile of our membership: We currently have 49 adults who have identified themselves as having SCLS or some variant of it, plus the parents of 5 children with SCLS. The remaining 46 members of this community are mostly close relatives of patients (a parent, sibling or grown child).
Two of the adult patients are unfortunately now deceased, and among the relatives we have two others who have lost a family member with SCLS. However, since there are quite a few patients who have not logged in for a number of months, there may be more who have passed away.
Of the 39 adult patients who have identified their gender, 20 are female and 19 are male. Of the children with SCLS, 4 are girls and 1 is a boy.
Among the 45 adult patients who provided a birth date, 5 were born in the 1940s, 16 in the 1950s, 15 in the 1960s, 8 in the 1970s, and one in the 1980s. Among our pediatric patients, 4 are approximately 5 years old and one is a teenager.
Of the adult patients who provided a home location, 35 live in the United States, 9 in Europe, 3 in Canada, and 1 each in India and New Zealand. Four of the children live in the USA and one in Italy.
Among the adult patients who identified the date of their first episode of SCLS, 20 said it was after 2004, 7 at some point during 2000-2004, and one before the year 2000.
In terms of the medications adult patients are taking, 8 are currently receiving IVIG and over a dozen are taking Theophylline and/or some other pill such as Terbutaline. In addition, 2 of the 5 children are reported to be receiving IVIG.
May I take also this opportunity to encourage all SCLS patients who have not done so as of yet, and are able and willing to come for a few days to the National Institutes of Health in Bethesda, Maryland, to donate blood for the ongoing scientific study of SCLS, to please do so. Have your primary doctor send a letter of introduction about you via email to Dr. Kirk Druey at KDRUEY@niaid.nih.gov