P.O.E.M.S. Syndrome (a very rare plasma cell disorder)

by Tamra (Holleigh's Mom)
(Kentucky)

Please Pray for my daughter Holleigh Smith. She is very weak. The condition she has is called P.O.E.M.S. Syndrome. The acronym (each letter) stands for

(P.) poly-neuropathy means that her nerves are affected. Including her Optic Nerves which have been swollen now for two solid years. It has already caused temporary blind spells, and severe migraines. The seriousness of it is, that she could lose her eyesight but she is under the care of a neuro-ophthalmologist.

(O.) organomegaly, organ enlargement (liver, lymph nodes or spleen), as well as other organs, several of which have died and already been removed.

(E.) endocrinopathy: disease affecting hormone-producing glands, (metabolic functions, thyroid hormones, etc.).

(M.) M - monoclonal gammopathy or monoclonal plasma proliferative disorder: a collection of abnormal blood protein cells. In Holleigh's case, her blood cells are degenerating, causing her to be severely anemic. Whenever they draw a vial of blood from her, it starts clotting before they can get it to the lab to test it, so they have to come test her again. Even though her bone marrow is constantly and rapidly creating blood cells to try and replenish her system, her body seems to attack the cells.

(S.) S - skin changes.

Holleigh's digestive tract is full of ulcers, and she's lost all of the villi (or tiny hairs in the colon) that help absorb nutrients from food eaten.

This syndrome has been seen mostly in elderly men. Holleigh is a 26 year old female. She is my daughter and I love her so much. I so much want her to have a normal happy life. She isn't even able to leave her apartment.

This syndrome is basically a plasma cell disorder.

There have been several successful stem cell transfusions, and bone marrow transfusions.

Although the patients became very ill initially after these procedures, they have ultimately improved a great deal. (with the exception of one death) So this is possibly something Holleigh may be facing someday very soon.

Most of her doctors have now familiarized themselves on her condition and her team of physicians and specialists are very well coordinated with their efforts to make her comfortable.

Please pray for her, to feel better and become healthier, and motivated to do everything the doctors recommend that she finds to be healthy for her system, so she can be as healthy as she possibly can be considering how ill she can be.

This winter is going to be a difficult one for her, with the need to avoid contact with other illnesses.

Thank you so much for your prayers. Please do continue.

sincerely,
Tamra (Holleigh's Mom)

P.S. a quick mention of her loving husband, who decided he wanted to marry her and take care of her for the rest of their lives together. Jeremy is truly a God Send to our family. They will be married 5 years on Dec. 24th 2009. They chose that day to marry after I lost my parents two days apart from each other. Dad on May 10th and Mom on May 12th. They would have been married 55 years the year our daughter married (2004) if they had lived.

May God Bless you all for this beautiful site.




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