Aloha,

I would just like to thank Lupus Hawai`i for all the help and support that you have given me. It has been God sent that Lupus Hawai`i is here for all of the patients who have been diagnosed and will be diagnosed with lupus. It is so good that we have people here in Hawai`i that can help us understand what has and is happening to us as we struggle to understand the effects of lupus.

It has been devastating to lose my job and my house because of this misunderstood and extremely difficult disease to diagnose. It took almost three years for the doctors to find out what was happening to me. And there were times that the doctors made me feel that everything was in my head and not in my body. None of the doctors empathized with me.  I would sit and just cry because there was no rhyme or reason for the way that I felt. But when I found Lupus Hawai`i, there were people who knew what I was going through and could identify with me.  I felt a sense of hope and comfort because I was not alone.

I have dealt with many people and different organizations based on the mainland and sometimes just the time difference alone leaves you with a feeling of solitude and isolation. By the time they return your phone call, your crisis has either been resolved or has escalated to a point that you’re left feeling "what took you so long?" or “there is no hope”. This situation alone can exacerbate your lupus condition to a point that you find yourself in the emergency room with blood draws and IV's and someone telling you “you are having a bad flare”.

With Lupus Hawai`i, you get an immediate response with a live person who has similar situations and conditions as you.  This helps you realize that they have the ways and means to get you the help or answers you need. This alone helps to relieve the doubt and stresses you feel, but most of all the frustration that this disease has imposed on your life and the lives of your family members. 

Personally, I have been given pertinent and up to date information available about my condition. This alone has given me the tools that have helped me understand what has been happening to me and I can explain things to my family so they can understand without doubt or fear of the unknown.

My wish is that this organization can be known through out all the Hawaiian Islands to reach people who are in limbo about their condition and feeling that all of this is just in their head. There is hope and there are people who have lupus and you are not alone!

Thank you for this opportunity to support this valuable and extremely need organization.

Stephanie

A Lupus Patient for too many years

(808) 538-1522
(866) 97-LUPUS [58787]
Neighbor Islands Toll-Free

1-866-544-0660 Fax