Welcome to CarePlace - Our new home for medical information and support!
My name is David and I am the Founder of the TransGlobal Health Community Center and over 600 Yahoo support groups. Recently, I joined CarePlace as a Community Advisor and am happy to welcome you all to our website. CarePlace is committed to making your experience with on-line support groups better than any other similar service on the web.
Let me begin by sharing a little personal information about me and my commitment to you. I share this with you, not to gain your praise or sympathy but to inspire and motivate you to become an advocate for your cause and for others with special needs, those with rare diseases and disorders and those with families trying to deal with difficult struggles of daily living.
I am currently a single parent of three wonderful children, two with sever disabilities as a result of a rare genetic disorder referred to as ‘X-Linked Alpha Thalassemia Mental Retardation Syndrome (ATR-X).’ We live in a small two bedroom apartment in Texas. It is not easy but we manage and are all happy.
The disorder affecting my sons is shared by less than 200 other boys in the world. My daughter, the oldest of the three, has a 50/50 chance of being a carrier of the genetic defect. She has not been tested but thanks to genetics work by the Gibbons Laboratory in the UK we know the exact location of the genetic disorder and she can be tested to see if she is a carrier.
Day in and day out I deal with doctors, the intrusion of therapist into our home, the school, the state program that helps provide services for the boys - I’m currently on a voucher program and do all the hiring, firing, time sheets and management of the attendants providing the boy’s care while I’m at work. Needless to say, this has a way of totally altering the life that you once thought you might have and I know all of you can relate to in your own personal way.
To me, my kids are angels. The two boys have no expectations of tomorrow, next week, month or year. They have no concept of evil and the evil of this world can not corrupt them. They are happy and laugh most of the time. Small things in life fascinate and entertain them. Their sister is extremely intelligent and spiritually gifted and desires to attend Moody Bible Institute in Chicago.
As most of you have experienced, living with a major health issue causes many problems in our lives. Many of you can not work, others have problems creating and maintaining friendships and others are overcome by financial difficulties. Things that most people can do without any problems like going out to eat with friends, attending worship services, and even doing grocery shopping is difficult. These are all reasons why we created our on-line support communities.
The development of the YahooGroups came about through my need to communicate with other parents with boys like mine. It was during this time that I learned that there were over 6000 rare diseases/disorders. I created a support group with eGroups to help us become connected with the other families and later decided I could help others in a similar situation by creating more groups and designing my own website to promote our communities. eGroups was later taken over by Yahoo and today, today we have over 600 groups serving 50,000+ members around the world.
Over the years, I have sought to improve our group communications but have been limited by the constraints of the YahooGroups. I have continued to search for a way and now have some wonderful news to share with you.
A few wonderful friends of mine, who are all knowledgeable and experienced in the healthcare profession, have joined together to develop what we feel will be the newest and best website on the World Wide Web providing information and support for people with health issues. Together, we plan to provide you the tools necessary to make your experience, as a member of CarePlace, a life enhancing experience.
It is with this passion, that we at CarePlace, wish to empower you to make a difference and become an active advocate, regardless of the situation you find yourself living. All it takes is your desire to make a difference in your own life and that of others. If you have knowledge, skill or talent in a particular area and would like to volunteer to help, please message me!