Is there a MDS support group in Texas?

[junglegirlsue]

My Mom really wants a support groups. Her dr didn't know of one. We live in the Dallas/Fort Worth area.

[triumphe64]

I called my doctor's office in Dallas. They did not know of any, but did a Google search and found a "forum" (this one?).

You might call Leigh Clark at the AA & MDS Foundation. She was helpful in finding me some people with my condition to talk to.

[Dick S]

I have searched and asked and have never found any local support groups. We are too small in number and we are scattered far and wide across the states and the world.
My hope is one day we will get the attention and respect this disease deserves, along with that will come funding, research and eventual medicines and possible cures. We can only hope and work at it.

The only helpful place I have found is this forum and I thank God for that, I finally found out I am not alone and others know what I am going through.

I finally get my BMB next Tuesday and I can finally put a name on my disease and possible treatment, instead of just Bone Marrow Failure or myelodyspasia. Two years of suffering and just hearing "it's not that bad YET" is really getting to me. Sorry for the rant.

[Margie]

I also live in the Dallas area. I have not located a support group. However, it would seem that there are at least three of us around the area.

age 68 Myelodysplasia 5 1/2 years. Transfusion dependent.

[Margie]

Picking up this thread of thought again, is there anyone in the Dallas, Richardson, Plano, McKinney, etc. area that would be interested in meeting every 3 months or so, just to become acquainted and to share information and experiences? If so, please email me through the forum and I will share my email address.

[Mimi C]

My mom was dx with MDS in Jan 09 and is in a clinical trial at Baylor. Doubt we would be available for meetings since we live 4 hours away but would enjoy sharing information and thoughts via this forum.

[MichelleD]

Hi Margie,

I have AA that has morphed into MDS and also have PNH. I'm treated at UT Southwestern. I live in McKinney and would love to get together with others in the area.

Michelle

[triumphe64]

Originally Posted by MichelleD

Hi Margie,

I have AA that has morphed into MDS and also have PNH. I'm treated at UT Southwestern. I live in McKinney and would love to get together with others in the area.

Michelle

I'm also at UT SW and live in Dallas. It works for me, even if it's only once.

[rschem]

HI everyone ,
Is there anyone with marrow diease in southerrn BC? I live in Creston. DX. Aug. 2008. Treated ATG in Vancouver Sept. Ihave partial recovery,no transuvions since Oct. 2008. I am on 350 mg. cyclosporne.My blood tests are HG 116, pt. 101,wbc 6, ng 4.4
I an 62 and was in good health 20007, Ihad a double bypass in Jan. 2008.
Have no heart problems since bypass surgery.

[Margie]

To MichelleD

I live in Wylie, Texas, and would be delighted to meet with or even to talk to someone who has MDS. If Neal or someone would be so kind as to refresh my memory on how to post my email address or telephone number where it is available to members only, I will do that. My mind will probably be working better at some point than it is now. It just seems to take a vacation ever so often.

[Neil Cuadra]

Margie,

You don't need to post your email address or phone number at all because there are two other solutions already available:

1. Any forum member can send you a Private Message within the forum system by clicking here:

Send Private Message to Margie

You'll see the message when you visit Marrowforums. You can reply by Private Message too and they'll see your reply when they visit Marrowforums. Only the two of you will see the messages so you can tell them your email address, phone number, or other information that way, or even have a private conversation without giving out any information at all.

2. Any forum member can send you email by clicking here:

Send email to Margie

You'll get the message by email and you don't have to visit Marrowforums to see it or to reply. You can share information by email.

For more details about how Private Messages and email work, see this section of the FAQ. If you'd still prefer to post your email address and/or phone number in the forums where only registered members can see them, please click here to send me a message about it and I'll help.