Membership in this SCLS virtual community has now reached 150, of whom 76 self-identify as adult patients and 6 as the parent of a pediatric patient.
This is quite an accomplishment considering that SCLS is exceedingly rare, this communication vehicle became available only in June 2009, and most of the world’s inhabitants do not read English or have access to or use the Internet.
To mark this milestone, I decided to make a list of our adult patient membership and to classify it using whatever everybody has posted publicly on their profile page.
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, date of birth, date of first suspected episode, and medications tried in the past or being used currently. *Therefore, may I take this opportunity to appeal to everyone to please complete and update their profile page.*
Here is a profile of our adult patient membership: Three of the 76 adult patients are unfortunately now deceased. And 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 and we just don't know it.
Of the 63 adult patients who have identified their gender, 35 are female and 28 are male. Of the children with SCLS, 4 are girls and 2 are boys.
Among the 69 adult patients who provided a date of birth, 12 were born in the 1940s, 21 in the 1950s, 23 in the 1960s, 9 in the 1970s, and 4 in the 1980s. Among our pediatric patients, 4 are approximately 6 years old and one is a teenager.
The home country of the adult patients shows the following distribution: 51 live in the United States, 15 in Europe, 4 in Canada, 2 in New Zealand, and 1 each in Australia, India, Singapore and South Africa. Four of the children live in the USA and one each in Canada and Italy.
Among the 43 adult patients who identified the date of their first episode of SCLS, 29 said it was since 2005, 11 at some point during 2000-2004, and 3 during the 1990s.
In terms of the medications we have been told adult patients are taking, 15 are currently receiving IVIG and almost as many are taking Theophylline and/or Terbutaline. In addition, 2 of the 5 children were 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 near Washington DC, 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_.