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“How would you help others in the PH Community stay positive and hopeful while coping with the challenges of this disease?”
My daughter was diagnosed in January 2010 at the age of 15 with PH caused by a congenital heart defect that wasn’t previously diagnosed. I remember for many months after this I couldn’t find any good information about PH and the information I did find was so scary that it left me little hope. In July 2010 I found PHAssociation and this changed my whole attitude. I had somewhere to go for education, support etc. I have always believed that knowledge is power.
I don’t want any parent or patient themselves to feel as alone and in the dark as Nicole and I did. I didn’t have much hope the first few months of Nicole’s diagnosis. Through the PHA support groups I found other parents, caregivers and patients that gave me hope for the future for my daughter. I have also been given hope since Nicole started taking Tyvaso and I am so very grateful. I must believe that there’s hope for a cure and Nicole will be healed.
If there’s one thing I can say to a parent, caregiver etc. is never give up hope and to stay positive as this will get you through a lot of difficult days. I must remain positive for no other reason than for Nicole. I will always be her voice and her advocate no matter how old she is. I will be with her every step of the way on this journey holding her hand.
Every day cherish the moments that you have and look for the good in them. I wish more people would realize this before they are faced with a serious illness. I certainly wished that I had.
Well there it is, please leave me your feedback and comments it will be greatly appreciated.