It has occured to me since I wrote
the
diary that
there are a great number of HCL patients that are
using the Internet to get information about HCL, to
attempt to answer questions about the disease and to
locate others with whom they may communicate about
their situation. As a result, a decision was made to
develop a second aspect to this website
devoted to helping others with HCL or their
loved-ones
to get information, ask questions of other sufferers,
locate others with HCL, and so on. The Hairy Cell Leukemia Support Group was created with this in mind. It is a group of people with intimate knowledge about Hairy Cell Leukemia; they've either had it, have it, or practice medicine on it. You can pose a question to this group by writing a letter to the HCL Support Group. All members of the group will receive your letter and then will decide if they can respond to your issue.
Additionally, a guide needs to be developed with basic information about the disease and its treatment.
As of now,
The Guide to Hairy Cell Leukemia only consists of some summary information about treatment and the various comments, stories and information supplied by the readers of this site. To make further information available to sufferers of HCL, we need to create
as much communication between ourselves as is
possible,
but that can only work if you, the person afflicted
or concerned takes an active role in this.
My sincere thanks to Geocities for providing the space for this helpful website.
Mark Taubensee
Do you have a question about HCL?
If you have a question about HCL, write the Support Group directly (in care of me). Your inquiry will be forwarded to all members of the Support Group. If they have information about your particular situation, they will respond. You may also pose your question to the
general readership by writing to the Message Board located on the main page. Your answers will come from other patients
and persons familiar with HCL who respond by sending
you an email, so remember to include your email
address or other information you feel
appropriate.
Do you want to talk to someone who has had
HCL?
Go to
The HCL Message Board and simply mention that you would
like to talk
to others about your situation and be sure to leave
your email address. They will write you, giving you
their phone number, so you may call them. Of course,
you could leave your phone number in your comment,
but that would necessitate expense on their part to
call you.
You can also participate by sending information to me, that I
will post in the site in some way. We need to create
this "Guide to HCL" that will contain all
kinds of practical information for people who have
contracted this disease. You know something
that can be of great help to new patients. For
example: if you lose your appetite during
chemotherapy, what foods might be best. Things like
this. There are several categories of information
that would be helpful like: how to break the news to
others, medicines that helped me, how to deal with
doctors, and so on. You can help to select the
categories of information that will be included and
responded to. Get it? Then the information will be
compiled and placed under headings that will be
continually added to, to keep information current and
broad.
What else can be done?
This site will be the result of all of us working
making suggestions about what you think needs to
together. You can have an active part in it by be added (or deleted), or anything else. What would
you
include if you had this site?
I'll need help to make this work, as it is
information from many sources that will make this
site the most helpful. Become a partner
in this effort. Let me know what
role you'd like to
play. Dare to daydream, to visualize how this thing
can
be most effective. Let's go!
their situation. As a result, a decision was made to
develop a second aspect to this website
devoted to helping others with HCL or their
loved-ones
to get information, ask questions of other sufferers,
locate others with HCL, and so on. The Hairy Cell Leukemia Support Group was created with this in mind. It is a group of people with intimate knowledge about Hairy Cell Leukemia; they've either had it, have it, or practice medicine on it. You can pose a question to this group by writing a letter to the HCL Support Group. All members of the group will receive your letter and then will decide if they can respond to your issue.
Additionally, a guide needs to be developed with basic information about the disease and its treatment.
As of now,
The Guide to Hairy Cell Leukemia only consists of some summary information about treatment and the various comments, stories and information supplied by the readers of this site. To make further information available to sufferers of HCL, we need to create
as much communication between ourselves as is
possible,
but that can only work if you, the person afflicted
or concerned takes an active role in this.
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