Back Again

[Laurie]

Hi Everyone,

It's been a while since I visited Marrow Forums. It's been to painful to relive the reason I joined this group but I have felt a tug at my heart asking me to return. I was only a part of this group for a very very short time; too short! For those of you might not remember, I found Marrrow Forums just minutes after my Dad was diagnosed with SAA. Sadly, he passed away at 68 year of age just a month after he was diagnosed. His death was a huge blow to our family; to my heart. I miss him terribly but I feel he is the reason I am posting today.

My Dad was always very supportive of me and helping me research my daughter's liver disease; helping me find answers or alternative treatments or just helping me find Hope. I believe that my Dad wants me to post because he wants me to help others. Help other people with AA get through the rough times, help people find hope, help people by offering my prayers.

My husband and I were talking not to long ago about the issues surrounding my Dad's death. I will not get it to those issues here but we feel strongly that we need educate smaller hospitals about AA; how to treat patients with SAA, how to communicate with families of SAA patients and where to go to for help if they feel they are in over their heads with a particular patient. We feel strongly that we need to tell doctors that it's okay to admit that they have no business treating a person with SAA. We really need educate small town doctors, small hospitals, etc. But where do we start, how can we get our message across?

The doctors that were treating my Dad felt that his SAA was a death sentence. I know that SAA is not a death sentence any more than my daughter's uncurable liver disease. I know that there is treatment, there is hope and knowledge is power. We need to arm ourselves with the power to make changes in the medical field with regard to SAA. Not everyone can afford to move clear across country to get help that is needed but we can certainly ask local doctors to seek help from specialists clear across the country.

Boy I have just rattled on and on. Just know that I am thinking of all of you, I think of all of you every day just as I think of my Dad. I pray for your healing and for hope.

God Bless,

Laurie Johansen
http://www.caringbridge.org/visit/roycollett
http://www.loveforashley.com

[Ruth Cuadra]

Dear Laurie,

It was so good of you to return to Marrowforums to share your thoughts with us about treatment of AA patients at small, local hospitals.

You have hit an important issue right on the head. You're exactly right that that local doctors, hematologists, and hospitals often do not have current information about bone marrow failure diseases and may be reluctant to seek information from specialists around the country. Most doctors never see a patient with AA, or may see at most a couple of cases in an entire career. This places a tremendous burden on families and caregivers to find information when their loved one is stricken and then convince the local professionals to accept that information and act on it.

For several years, the Aplastic Anemia & MDS International Foundation has tried to address this lack of understanding about bone marrow failure diseases among health care professionals by developing materials, programs, and services directed to this particular group. In coordination with the Bone Marrow Failure Disease Consortium, the Foundation is charged with "[enhancing] the availability, accessibility, and quality of information offered to patients and health care professionals."

Laurie, you have valuable experience to share about your Dad's treatment. You may want to contact the AA&MDSIF to get their information packet for the health professionals in your community and talk with them about other ways we can work together to educate those who take care of us about these diseases.

Thank you for sharing your story. And, again, my condolences on the loss of your father.

Ruth

[Tom M]

Laurie - I am sorry for your loss. You are right when you say that knowledge is power. Anything we can do to help educate our doctors and hospitals regarding these diseases with be a tremendous help everyone.

Thank you for your prayers. They are another source of power.