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It looks like we will be open for business pretty soon. I have begun my contacting the large corporations, drug companies, foundations and agencies for financial support, initial gifts to get up and running. I have received such positive feedback, suggestions and applause at the idea. I have been sent packages of forms to fill out and will begin soon to fill them out, some are very long and require so much information, some are just not that big of a deal. I do find that I am in a catch 22 in most cases, I am finding that they wont give to the house until we have purchased the property and cant get the property without the grants first, but I am not giving up, God is great and this needs to be done. I will keep working on the business plan, getting everything needed. I have a logo now, an email a website almost ready to launch and have a ton of information that needs to be organized, also I will provide links to other groups and hope they will take my link so people from thier groups can find us.
this is the introduction....
The Liver Spot!theliverspot@gmail.comA group home where a patient can come to and go through the year long treatment in a safe and supportive environment.“Helping some good people go through some very bad times”… The patients will be offered a private room, delicious, nutritious food, supervised medications for side effects, walking paths, exercise, emotional support from people previously on treatment, people that were non-responders, those that have cleared the virus and other knowledgeable volunteers to support, talk with and listen. The property will be set up like a house and will have family rooms, large kitchen & eating areas, private sleeping quarters, a lake with a walking path, benches and trees will be placed in memory of those that lost the battle with the virus and will be honored. Arts, crafts, music, gardening, fishing, and entertainment will be available, and projects will allow many to improve and support the house in wonderful ways and additional guest cabins will be installed as we can so that former guests and members of support groups can have a beautiful, private place to reflect, rest and restore while providing support and understanding to current guests if they feel like it. There will be many wonderful projects in the future but first things first. Find and secure the property, alter to make property useful for guests. Furnish and staff the property and determine needs, rules and requirements and set “Grand Opening” celebration date….
For many, it is difficult to go through this treatment even with the finest support. There are side effects that are unique to interferon and others that are unique to ribavirin. The most common side effects are flu like symptoms and fatigue. The flu like symptoms include chills, hair loss, anger, sadness, fever, aches, pains, migraines, nausea, diarrhea, vomiting, itching, insomnia, dehydration and sores in the mouth and on the scalp. Side effects will complicate treatment in 60% to 70% of patients. This is felt to be largely related to interferon.The other common side effects include a decrease in the white blood count, as well as in the platelet count (a blood clotting element). These are felt to be interferon side effects also.The other side effects of interferon include depression, irritability, sleep disturbances, and anxiety as well as personality changes. Generally these are manageable but take a fair amount of counseling with the patients.The most significant side effect of ribavirin is hemolytic anemia. Hemolytic anemia is a type of anemia due to destruction of red blood cells. While most patients will be able to continue treatment despite this hemolytic anemia, about 10% of the patients may need to reduce the ribavirin dose to ensure that the anemia does not become more severe.Other side effects with ribavirin include cough, and some shortness of breath. There also may be severe skin rashes, unexplained anger, (called Riba rage) and other changes in thinking, (depression, aggression) hair loss, severe dehydration all of which make support extremely important. (taken from the Hep C foundation website, proper acknowledgement will be given)Hepatitis C has a bad reputation being linked with drug addicts sharing needles, however many people were exposed to the virus decades ago (before universal cautionary procedures) and could have been exposed to the virus through dental work, blood transfusions, lack of proper sterilization of medical equipment, using personal items of someone with the virus, and on a lesser level it is thought could be spread through some kinds of sexual practices. The Liver Spot will support people during treatment, after, before treatment and educate the public on how you can and can’t get the virus.I am looking for recent stats, and will work on the description more… Statistics reveal that about 300 million people are infected with the hepatitis C virus worldwide. However, the number of new hepatitis C cases diagnosed each year in the US has been steadily decreasing. Based on current statistics for hepatitis C, it's estimated that 8,000 to 10,000 people die each year from chronic liver disease caused by this condition.
This is what I have so far....
UPDATED GOALS
Comments
Good on you, i went through real terrible agony at times and had no support at all. Best of luck from Northern England. djharg ps hope your feeling a bit better.
djharg
Pain...you are one amazing person!!! Best of luck to you:):)
debbear
You are a good person! Please keep me posted.....I would like to donate a gift, or some time, if I can.
rbm
Wow - you are realy tking ona lot here. First thing I'd do is go looking for a Site - once you have the Land, (general donations from HepC Groups firstly) - you can move from there: You need a firm base to begin with & Real Estte is the best.! Best wishes JaneD.
JaneD