Lowe Syndrome (LS) is a rare genetic condition that causes physical and mental handicaps, and medical problems. Also called the oculo-cerebro-renal (OCRL) syndrome, it was first described in 1951 by Dr. Charles Lowe and colleagues.
In 1983 a handful of parents founded the Lowe Syndrome Association (LSA). The LSA is an international, voluntary, non-profit organization made up of parents, friends, professionals, and others who are interested in Lowe syndrome, a rare genetic condition that almost always affects only boys .
The primary purposes of the LSA are:
- to foster communication among families,
- to promote a better understanding of the syndrome,
- to provide medical and educational information, and
- to encourage and support research.
Since Lowe syndrome is rare, affected families often feel isolated and alone. If you know of such a family, you can help by giving them information about the Lowe Syndrome Association.
If you are a family affected by Lowe syndrome, please contact us. You are but an email message away from linking with other families living with this rare and complicated condition.
| Living with Lowe Syndrome Book
It has been twenty-three years since the first edition of the Living with Lowe Syndrome book was published and it is with great pride and pleasure that the Lowe Syndrome Association presents the fourth edition. For the many families who have relied on this book as an ‘operating manual’ you may notice that the book has almost tripled in size (now 121 pages) since the original publication in 1987.
In early 2008, the LSA Board of Directors made a decision to support an extensive research project known as The 2008 Comprehensive Survey on Lowe Syndrome. It is because of the data gathered from the 137 families who participated in and completed their 2008 surveys that we are able to revise and update the book. The LSA also relied on support from members of the LSA Medical and Scientific Advisory Board and additional clinical professionals who reviewed and updated sections from the previous edition.
We were able to expand and update all sections from the 3rd edition and add many new exciting sections that we believe will assist parents in caring for individuals with Lowe syndrome.
Updates include new information regarding Seizures, Abnormal Labs, Bones and Joints, Dental and Puberty and a new Parent Resource section. The new edition also includes an extensive section on Behavior and Behavior Management with suggestions on positive reinforcement techniques. Based on the survey responses, we have added a Development Milestones section that outlines the ages individuals surveyed first achieved language, cognitive and motor skill abilities.
Copies of this booklet are available at $15 per book for active LSA members and $25 per book for non-LSA members. Shipping charges to destinations within the U.S. are included. Shipping to international locations will incur an additional shipping charge per book.
For information on ordering a copy of the book, please see our LWLS information page.