You should get in touch with NORD, National Organisation for Rare Disorders,Inc. You can e-mail them at the following address:
orphan@NORD-RDB.com
They also have a home page that may have some information:
http://www.nord-rdb.com/~orphan
Good luck. Zarin
Dear Roberta,
Refractory sideroblastic anemia is just a fancy name for a close relative of aplastic anemia. We know now that all of these related anemias are caused by the same mechanisms. Each person gets her/his own diagnosis on the basis of their genetic susceptibility NOT on the basis of these being different diseases.
When dealing effectively with them, it is necessary to go to the causes. Use the archives feature for this BB & read everything you can find about aplastic anemia (AA). Then, if you still have questions, write again.
At your age, you have to get to this ASAP. There is a solution but once the cells are dead, only the grace of God can bring them back. So long as they are just "sick unto death" resolving the causes will allow them to recover.
Walt
In Reply to: Re: Rare blood diseases posted by Zarin on May 01, 1998 at 03:24:20:
Dear Melissa,
I have to respectfully disagree with Zarin. Not that he is wrong in his recommendation but that this resource will do nothing but help lable the condition & suggest more suppressive treatments. The clue to resolving these "rare blood diseases" is to look at how their causes are all the same & do something about the causes! You will get nothing about that from this resource.
If you are only interested in conventional treatment, this could be the place to go. I assume that anyone putting a note on THIS 'site is interested in learning about causes.
Walt
In Reply to: Re: Rare blood diseases posted by Walt Stoll on May 03, 1998 at 12:24:46:
Dr Stoll.
I am a female. not a male. I have Protein C Deficiency and NORD was helpful enough to forward me information on my disease.
I agree with you that a lot of blood disorders can be controlled with proper diet, however, like in my condition, no matter how much vit.K I remove from my diet, I am still dependant on wafarin as my liver is unable to synthesise Protein C.
NORD is an excellent place to get information. Cures are a different ball game. Zarin
i would like to chat with parents who lost a child tp aplastic anemia my e mail address is ibebe31975 at aol.com
In Reply to: Re: aplastic anemia posted by irv on May 04, 1998 at 19:49:53:
i would like to find a chat room with parents who lost a child to aplastic anemia my beautiful daughter was a college student she was 22 years old and it hurts so much
In Reply to: Re: Rare blood diseases posted by Zarin on May 04, 1998 at 08:23:32:
Dear Zarin,
I am sorry you got the impression that I thought that diet had much to do with blood diseases. You might re-read my note. I seriously doubt that I said that it did. Other than being an important part of a serious wellness program (which would help anyone with any chronic disease) diet has little to do with this. Multiple Chemical Sensitivities (with their profound toxic effects on blood producing tissues in the body) are MUCH more important than any dietary therapy.
That is why any person with chronic blood dyscrasias need a Clinical Ecologist on their professional team. This is something you would know if you had even taken a look at the archives for this BB on this subject. Link: archives.
NORD will give you good information if you are only looking for conventional treatment. If you are wanting to learn what people can do to help themselves, you will get NOTHING there.
Walt
Dr. Stoll,
I had a hemoglobin eletroanalysis and was diagnosed as having "thalasemia". Is there any nutrition medication out there that can help me raise my red blood cell count?
Your answers are deeply appreciated.
Thank you,
Z
In Reply to: Re: Rare blood diseases posted by Walt Stoll on May 06, 1998 at 09:19:04:
Dr Stoll,
I don't have an ego problem. I am simply dying of a disease I have no conrtrol over.
Many months ago, when I had posted a poser on your borad, you dealt with the problem in an extremely skillful way, without adressing the issue that I HAVE THE PROBLEM.
I do not expect any cures from any "internet doctor". I do not need further grief in my life. I do not have choices. I cannot accept rhetorical debates.
I came to your board looking for an alterantive, not having found it,, I still have to accept that atlesat NORD is willing to give me information on my disease. I am not looking for cures. Only information. I still believe NORD is an excellent source for information on orphan diseases. Zarin
In Reply to: thalasemia posted by Z on May 07, 1998 at 21:05:35:
Dear Z.,
There are but I do not know what they are. You need to find a good Naturopath & Homeopath close to you who can help you with this. Since it is a genetic condition, you will always have to manage it but at least you will be able to.
Send $5 (to cover cost) to the American Association of Naturopathic Physicians (AANP), 2366 Eastlake Avenue East #322, Seattle, WA 98102 & they will send you a brochure about Naturopathy AND a listing of the best Naturopaths in your area.
Let us know what you learn.
Walt
In Reply to: Re: Rare blood diseases posted by Zarin on May 09, 1998 at 08:24:07:
Dear Zarin,
I am not disagreeing with you so long as all you are looking for is "treatment" and descriptions of the natural history of the "disease".
I assume that anyone coming to THIS 'site is interested in understanding causes & what to do about them. These are the very things that no one will get from NORD.
Walt
You should contact the Aplastic Anemia Foundation of America located in Baltimore Maryland. You will have to call information for the phone number. They have sent me great information on this disease. They have a quarterly newsletter and lots of phamplets of free information and latest medical updates. I contacted them when my son was diagnosed with this disease. I hope the best for you.
In Reply to: Re: aplastic anemia posted by sandy clark on May 13, 1998 at 18:01:17:
I am 20 years old and have been battling Aplastic Anemia as well as chronic GVHD (Graph V's Host Disease) for the past 4 years. I was diagnosed with Aplastic Anemia in Dec. of 93 and had my BMT the 3rd of Jan. 94. After making a remarkably fast recovery (18 days) I was aloud to go home. With in two months I was hospitalised with GVH of the intestinal track and have been fighting continously for the last 4 years. The GVHDisease has spread from my liver (where it started) to my stomach, on through my lungs, kidneys, all across my skin, and into my eye's where it remains for the time being. I would appriciate any info you could send me and I would love to offer my experience to anyone who may need it!!!!
Thank you
Stan Ferguson
In Reply to: Re: Rare blood diseases posted by Walt Stoll on May 11, 1998 at 10:15:13:
Dear Dr. Stoll,
I really wish there was some magical cure for someone like me. But there isn't and I accept it. All I am trying tio do is hold on to some quality while I can. If at times I sound testy, it is because I am irritated and frustrated that I cannot help myself more. Please donot take it personally.
I agree that NORD cannot cure, but NORD can provide information. and knowledge about one's condition is vital in the management of a life threatening disorder.
In management of my disease, I have effedtively brought down my depoendency on Wafarin from 11mg a day to 7 1/2 mg by eleminating foods rich in vitamin K, this has been a great relief for my poor liver that had been working overtime, dealing with massive doses of wafarin. Without knowledge on my condition, I would have accepted an ever increasing dosage of wafarin as my disease progresses. Zarin
In Reply to: Re: aplastic anemia posted by Stan Ferguson on May 13, 1998 at 19:42:33:
stan,
my 18 year old son was diagnosed with aplastic anemia 6 months ago, at that time he was moderate. he is now severe we are at Riley Hospital now where he is receiving ATG treatment. We will be here until Sunday May 17,1998. you may call and talk if you would like 317-275-9050. the best infro we have received has been from aplastic anemia foundation
In Reply to: Re: Rare blood diseases posted by Zarin on May 14, 1998 at 09:29:24:
My friends you are both arguing a wrong issue.!!!
There are two issues:
1. What it is, what caused, and what is the mechanics of the problem, so one can understand how to deal with it!
2. Once we understand what, how and why than we may look fo r solutions of treatment.
While ZARIN is demonstrating frustration with the effects of such, it is counter productive to contradict that such information is usless. It is up to other party to choose which way to swing!
Dr. Walt has a counsulting approach with the solution to not well explored issue.
It appears to me that both of you need to take ten deep breaths and than read all the matters from the beginning to see what both of you are trying to say.
In such communication the exchange of ideas is what counts and not authoritative forcible perswasion...
Start smoking peace pipe!
Than look once more for cause, effect, options
and than the solution.
In Reply to: Re: ????Rare blood diseases posted by JN on May 14, 1998 at 20:25:07:
Thank you for your timely comment. I am looking for ways to manage my disease that's all! Zarin
In Reply to: Re: aplastic anemia posted by Stan Ferguson on May 13, 1998 at 19:42:33:
Deasr Stan,
Use the archives feature provided for this bb & read everything you can find about aplastic anemia.
THEN, if you still have questions, write again.
40 years ago, when I first started practicing medicine, most physicians never saw a case of AA in their average of 40 years of practice. Now, the average physician sees several a year. WHY do you think that is?
Once you look at the archives and read the references there, you will have made the first step to getting this behind you.
Walt
In Reply to: Re: Rare blood diseases posted by Zarin on May 14, 1998 at 09:29:24:
Dear Zarin,
I. too, do not know if your condition has progressed too far to be reversed. However, I DO know (from your comments) that you know very little of the now known causes of your condition. It may be that, with all the effort you have already put into this that you have reached your "high water mark" of what you are willing to learn. That is a common washout I have seen in conditions like this.
When people are sick, they tend to make poor decisions. Your note alludes to that or I would not have mentioned it.
I NEVER take comments on this board "personally". I hope you do the same. If I did not think that you could do a lot better with a whole new way of looking at "your condition", I would not continue to spend my time with this.
All you would have to do is study the progress in the "human genome project" to see that one of their BIG discoveries is that the gene only contributes part of any condition like this. There are MANY things (that ARE within your control) that determine the expression of that gene. THAT should be "scientific" enough for you.
Doing what you have been doing so far only blunts the tip of that expression.
Tell me when I should give up on you.
Walt
In Reply to: Re: aplastic anemia posted by sandy clark on May 14, 1998 at 13:02:27:
Dear Sandy,
It is too bad that "the best information you have gotten so far is from the Aplastic Anemia Foundation". They are just like the Heart Association, Cancer Society, Arthritis Foundation, etc., etc. They exist mostly to support the conventional medical monopoly--not for the benefit of the patient. I know it may be hard for you to believe this but NOW the welfare of your child is on the line. Hard as it is to think in different ways, that is what is needed now.
EVERY major advance in medicine requires a different way of thinking about things. Use the link: archives and read everything you can find about AA (including the references).
THEN, if you have more questions, write again.
Walt
In Reply to: Re: Rare blood diseases posted by Walt Stoll on May 16, 1998 at 10:11:26:
Dear Dr. Stoll,
I don't intend to give up on me , so don't give up on me as yet.. I will take any comment or helpful hint that can improve my condition, I am really tired of taking so much wafarin.
I am changing the subject as it is way down on the boards and it takes me a while to get to it.
Zarin
MY UNCLE HAS A TERMINAL PROBLEM CALLED MYELODYSPLASTIC SYND. AND I WAS WONDERING IF THERE IS AN ALTERNATIVE MEDICAL CLINIC WHICH COULD DEAL WIHT THIS PROBLEM fin old vac I'VE BEEN A VEGETARIAN FOR 15 YEARS AND REALLY BELIEVE IN ALTERNATIVE MEDICINE. I REALLY HOPE YOU GET BACK TO ME BEFORE TIME RUNS OUT !!!!! THANK YOU VERY MUCH, GEORGE BOWDEN bigben88@hotmail.com P.o. BOX 83 VALDEZ, ALASKA 99686
In Reply to: UNCLE JOHN posted by GEORGE BOWDEN on May 28, 1998 at 22:48:21:
Dear George,
Myelodysplastic Syndrome is just one of the many names for conditions caused by environmental toxins (pollutants) that destroy the bone marrow and blood producing tissues of the body.
The name assigned has nothing to do with any different causes but with the genetic predisposition of the person with the diagnosis. The reversals of all of these conditions are all the same.
Go to the archives and read everything you can find about Aplastic Anemia (another one of the "names" related to what "Uncle John" has). What you need is there.
In the meantime, a serious "wellness program" will help anyone with these conditions & can be started without any of the information above.
THEN, if you still have questions, write again.
Walt