Wilson Disease Association
Rating: 5 stars 2 2 reviews
5572 North Diversey Blvd Milwaukee WI 53217 USA
It is our vision that nobody need suffer from Wilson disease. We desire to fulfill our vision to be recognized for excellence as an international nonprofit health organization. We are committed to this for the benefit of all affected by Wilson disease, by professionally achieving our purpose.
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The Wilson's Disease Association maintains an informational website, conducts support group meetings, and holds an annual educational conference. We educate health care professionals and patients on proper diagnosis, treatment, and rehabilitation.We support research and clinical investigation.
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9 people found this review helpful
It was in 1999 when my daughter Vanessa, then 14 years old started to show signs of a liver disease. Her eyes turned yellowish and she started vomiting. I sent her at a nearby government hospital but was rejected. So, I decided to bring her at a private hospital where she was confined for about 10 days. Though the blood tests resulted negative of hepatitis they still indicated at the medical abstract as viral hepatitis. She was blood transfused and later discharged. After a couple of months, she felt weak and had jaundice again.It was then that we started visiting the doctor almost weekly. There was another confinement. She was given Vitamin K shots, aminoleban, prednisone and Vitamin B. In 2000, after several months from here 2 confinements, the more she became weaker. She often had muscle spasm on both legs which pained her the most. Her tummy became big. Her situation worsened when she can't hardly speak anymore. She will just cry and walked like a robot. At one time, I patiently waited her gastroenterologist after clinic hour and asked him about the real condition of my daughter. All he could say was her illness would require long treatment. In July 2000, she acted strange and utter words she never used to say. When we brought her at the hospital she was tied in bed and acted as if she was possessed by an evil spirit. It was about 3 days when she got back to her normal self. After 2 weeks she was again admitted at the hospital this time she lost her vision for 3 days. After a week confinement and a transfusion of white blood platelets she regained her vision and released. It was in September when Vanessa got into a coma for 3 days. Being a single mother, I asked my family's opinion and we decided to bring her to Philippine General Hospital. To my dismay she was denied admission for the reason that the hospital is full. It was my faith that I could hold on that time. Through prayer, the Lord directed me to bring her at the nearest hospital which I thought was Medical Center Manila, a private hospital. There she was admitted and immediately underwent series of lab tests. They asked me who my daughter's doctor was. Acting through faith, I mentioned the name of a doctor once mentioned by my brother.In a little while, the doctor I mentioned, Dra Ibanez, arrived. She told me that the lab tests had a 20/80 chance of survival for Vanessa. That all we could do is pray. At the lobby of the hospital I prayed, "Lord, I know that with You nothing is impossible. Even if there's only 1% of survival for Vanessa I will hold on to it because I believe in YOU." The next day she regained consciousness. But she was almost paralayzed and can't speak. I know God answers prayer. She brought us to Dra Ibanez because she was able to correctly diagnosed her. She said the medicine is not available locally though there's a branch office of the manufacturer of the medicine. I went to the pharma office but said they don"t have even ! bottle stock of the medicine because there's no patient in need of it. Dra Ibanez told me about her patient 10 years ago who may have some stock of the medicine. My brother lost no time and search a remote province to locate the patient. Fortunately, he was able to trace the patient who came from a poor family and gave the first 40 tablet of cuprimine. After a month of confiment she was released again on wheel chair. In December she was able to walk and speak again. With only her big tummy as the only signs left, I thought everything was okey. in March 2001, she felt weak and had constant fever that I had to confine her again. She was released and after a week back to her hospital bed and was released again. March 26, on her check up with Dra Ibanez, she was advised to be confined again. She refused. She said she had enough of the hospitalization and already resigned to her fate. She knew we don't have enough money for confinement. The next day, March 27, from the wee hour of the morning while I continue to wipe her with cold towel to subside her fever we had a heart to heart talk... She left me with her seven last words! One of it is to reach out to other WD patients. A week after she was cremated on April 3 I opened my email and read a message from Mr Philip Sellner, then WDA President directing Ms. Mary Graper to assist me. I extented my gratitude and said their help came a little late. Mary and I had became good friends. Now she is the President of WDA and I was designated as the support contact person here in the Philippines. Through our joint effort and one goal to reach out to WD patients WDA, USA and WDA Philippines had helped out about 30 affected patients, about 20 died and 10 surviving. Inspite of some losts, I know God will continue to sustain our needs through the kindness of WDA. Without them, many lives would had been lost. Now, WDA is the sole hope of all WD patients in the Philippines. God is awesome! God is Good!
I've personally experienced the results of this organization in...
my life. God works amazingly and used WDA, USA to be a valued channel of blessings to the poor WD patients around the world.
If I had to make changes to this organization, I would...
suggest that they be given more sources of fund so they would grow bigger to meet the needs on the growing number of Wilson's Disease patients.
What I've enjoyed the most about my experience with this nonprofit is...
The joint prayers we always had no matter how far our distance was. Whenever there's a threatening problem we always unite in prayer.
The kinds of staff and volunteers that I met were...
The staffs were so helpful and kind
If this organization had 10 million bucks, it could...
Break the hindrances for the awareness of this rare illness, Wilson's Disease.
Ways to make it better...
If more lives had been save as WDA, USA and WD Philippines are now doing.
In my opinion, the biggest challenges facing this organization are...
The generation of the needed fund
One thing I'd also say is that...
I am forever greatful to Wilson's Disease Association for making my daughter's last word to helo other WD patients. Truly, God works amazingly to those who believe.
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