Alison is a remarkable woman. She is actively involved in the WSS community and has made herself available for countless questions from parents of children with WSS. She gives us hope.
LIfe with WSS is a rollercoaster. There are good days and bad days. There are a lot of medical issues, a lot of appointments, a lot of understanding and support is needed each and every day. A lot of medication, a lot of guidance is needed as an adult. A support system that has your back including family, friends, my horse therapy is great for the anxiety that WSS adults have as well as the physical issues that some may have. Overall, WSS is a gift if you can think of it that way!
– Allison, WSS Warrior
Alison, You are an amazing woman! Thanks for sharing your story and being such a wonderful role model in our WSS Family.
Alison!! Thank you so much for sharing your insight. My daughter, Marisa, is 22 yrs old and was literally just diagnosed THIS MORNING!! We have searched for 22 years for an answer and here we are! Would you at all be willing to “be friends” with my daughter on Facebook or correspond with her by email? She is motivated and determined to live independently and have a life she loves and my family and I support her 110%. I know she would benefit from talking to another WSS Warrior adult! <3
Hello Teresa, My niece is 20 and not diagnosed. How did you get diagnosed? What type of doctor did you go to see? I am not sure if it is WSS, but it’s close! Thanks for your help.
Audra,
Your niece should be seen by a clinical geneticist. These are genetics specialists who can be found in major medical centers (in small or large cities). Some genetics departments are located in children’s hospitals but they will often see a 20 year old young adult and even older adults. Good luck to you and your niece!