As we know, VHL is caused by genetic problem. we have to suffer to unlimited MRI,surgeries,SRS ( gamma knife, cyberknife and protron theopy ), and steriods until we die.
I am VHL patient in HK, experienced two mircosurgeries,two gamma knife and one cyberknife in last 20 years, I still have 11 hemangioblastomas in my brain and spinal core.
I have taking accuncture and chinese herb tea from a very old chinese doctor weekly,I am also taking Propolis and Spirulina everyday. It seem to be very helpful to slow down the tumours and reduce all side effect, such as headache,dizzle and numbing.
There are so many research and trial on difference
medicine, such as Sutent and Avastin which try to solve our tumours which are caused by our abnormal gene.
I want to know,is there any insitution is doing reseach or trial on DNA repairing, Stem Cell repairing or tranplant which might fix our basic problem, our VHL gene.
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Solve our Basic problem
- By wilson-hk
- Posted May 10, 2009 at 3:24 pm · 7 replies
- In Medical treatments that worked for me
- Shared with the public
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- By joyceg98
- Posted May 11, 2009 at 8:27 pm
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Glad to hear from you in Hong Kong! We would be interested to hear more about your Chinese herbal medicine treatments for slowing down tumor activity. As you say, slower is definitely better!
Yes, there is research on this problem, and in fact they have "fixed" the DNA information in mice in the lab -- not in every cell, but in a particular tumor. It does make the tumor go away.
The basic problem with gene repair research today is how the procedure will be accomplished. Fixing the VHL gene means repairing every cell of your body -- not just one time, but in a way that would fix every new cell your body makes, or fix all those new cells. The body makes millions of new cells every day.
Watch the press for articles on stem cell technology for any disease, and hope for them to succeed in transferring the information into the cells.
Early attempts have not been particularly successful. While they have been able to change some cells, the new ones have to be fixed again, so the treatment has to be on-going. For cystic fibrosis they used an inhaler which you could use repeatedly.
The "vehicle" for delivering the repair information to the cell is called a "truck". For this they use an inert virus. Once they find the right "truck" they could theoretically use it to deliver any repair information. So we need someone to create the "truck".
Of course doing repairs at that level is a little like doing repairs on the operating system of your computer -- or the registry. If you don't know what you're doing, you can make it worse. And we are only just now learning about our DNA and how it works, so we are playing with a very critical basic layer of how human beings are formed. So we have to be extremely careful, or we could make things worse. It is interesting to read about attempts to use this kind of therapy. So far there are many more failures than successes. But remember that Thomas Edison failed 1000 times before he successfully produced a light bulb. As he put it, he learned "1000 ways how not to make a lightbulb." We are still learning our 1000 ways how not to repair DNA.
There are many different approaches to "fixing" VHL, and more drugs coming into clinical trial every month. See http://vhl.org/trials and http://clinicaltrials.gov
All best wishes,
Joyce
- By wilson-hk
- Posted May 12, 2009 at 3:23 am
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nice to see u again since 2004. is there any new proposal between VHLFA and china yet,since PRC have the largest patients group in this planet (39000 cases ).The adventages to link up this portion are as follow:
1/ largest patients group and more easier to have trial member
2/ lower cost for research
3/ shorter trial period
4/ easiesr to fund raising
5/a. can combine reseach and trial with chinese medicine (herb and accuputure) which is not comment in western yet.
b. more easier to get patient tissue and even stem cell donation
5/ if you can get grovernment support, you will easily get all sort of support around the country.
But, you have to find a right person to deal with who have very good reputation and grovernment backgroung in PRC, eg. Dr wang zhong cheng ( known as the father and fromer of neurosurgery dept. of tiantan hostipal in beijing.
As one of the patient in asia. This is my dream to have VHLFA and a fromly reseach insitution in my country.
please contact my E-mail if you need any support in Beijing, eg.
1/ to arrange meeting with Dept of health of PRC or meeting with Dr. Wang in Beijing.
2/ to setup a chinese website of VHLFA. ( I will reasponsible for all cost of setting up a IT technical and tranlation team in PRC.
- By wilson-hk
- Posted May 12, 2009 at 4:25 am
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as a person who have studying chinese medicine for more than ten years. In the theory of chinese herb medicine. we have single and mutiple recipe. the single recipe mean each herb have its own unique function.but some, may be 2 or even more herb using combinely. its will have some difference function.
A typical example : Realgar and Stephania are both poison. But an experience chinese doctor will using them together to cure some nerve disease.
one the other hand, during the herb treatment. the patient body will condition is keep changing. A good chinese doctor will change the recipe to fix difference situation .
That,s why, my advise is , unless a single,function known herb can be taken safely, DO NOT take the other patient recipe.
Consult a good chinese doctor before treatment.
in the case of Accupuncture, which is very good in solve CNS problem, but the theory is the same. each location have ita own function. but mutiple location will have difference effect.
- By wilson-hk
- Posted May 12, 2009 at 4:59 am
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The DNA repair or Stem cell tranplant. Principly, The stem cell tranplant is the most effective and only treatment for all ( around 1700) kinds genetic discease.
As we known,, HSCT is the best treatment for Thalasaemia . which is a lot of similar to VHL, melfunction of DNA, chomosome problem. cause cell unbalance all over patient body. after HSCT. a healthy stem cell will rebuilt all the boold cell in the patient body. I do not quite understand. if HSCT ( which have so many successful case in PRC and all countries in thalassaemia )is good for some other genetic discease, why we still pending on VHL disease.
All patients of VHL disease are calling for help. Our future is totally hang on those reseach insitation or professional person. A reseach or medical trial must be start up with a well reputatible person or insitation. VHLFA is the one.
You are the hope of all VHL patient. Thank you and keep up.
- By joyceg98
- Posted May 12, 2009 at 11:33 am
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Thank you for the offer of help! I will share your ideas with a couple of doctors here and see what interest we can get.
Feel free to write to me at director@vhl.org
Best wishes,
Joyce
- By pupa
- Posted May 12, 2009 at 8:11 pm
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This concept of thinking in very informative so what is the next step for preventive tumor growth I am sure all vhl patientys can benefit so what is the treatment for tumors in the eye brain spine pancrerac kindneys as yo see from the top of the head to the bottm of the body is there a connection to the top of the head is the eyes and than the brain are the tumors there more common than the bottom of the body ? just a thoughtpupa
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