has anyone heard of this?

i am so darn tired spent the entire day at the hospital AGAIN getting the fluids drain out of dads tummy he has a nasty disease at least they think it is this but it is a rare disease is 8 in one million people and how he got this i dont know needless to say it has been a very stressful after i calm down some more i will post more about it but you can read this and see what i'm talking about it so here is the definition and name please leave a message if you have read this i miss you guys from the ville , my friends is if you read this my friends please leave me a note if you don't want me to publish say and i wont but would love to hear from you hugs



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THE DESCRIPTION OF AMYLOIDOSIS


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Amyloidosis is a progressive, incurable, metabolic disease characterized by abnormal deposits of protein in one or more organs or body systems.

Description

Amyloid proteins are manufactured by malfunctioning bone marrow. Amyloidosis, which occurs when accumulated amyloid deposits impair normal body function, can cause organ failure or death. It is a rare disease, occurring in about eight of every 1,000,000 people. It affects males and females equally and usually develops after the age of 40. At least 15 types of amyloidosis have been identified. Each one is associated with deposits of a different kind of protein.

Types of amyloidosis

The major forms of this disease are primary systemic, secondary, and familial or hereditary amyloidosis. There is also another form of amyloidosis associated with Alzheimer's disease.

Primary systemic amyloidosis usually develops between the ages of 50 and 60. With about 2,000 new cases diagnosed annually, primary systemic amyloidosis is the most common form of this disease in the United States. Also known as light-chain-related amyloidosis, it may also occur in association with multiple myeloma (bone marrow cancer).

Secondary amyloidosis is a result of chronic infection or inflammatory disease. It is often associated with:

* familial Mediterranean fever (a bacterial infection characterized by chills, weakness, headache, and recurring fever)

* granulomatous ileitis (inflammation of the small intestine)

* Hodgkin's disease (cancer of the lymphatic system)

* leprosy

* osteomyelitits (bacterial infection of bone and bone marrow)

* rheumatoid arthritis

Familial or hereditary amyloidosis is the only inherited form of the disease. It occurs in members of most ethnic groups, and each family has a distinctive pattern of symptoms and organ involvement. Hereditary amyloidosis is though to be autosomal dominant, which means that only one copy of the defective gene is necessary to cause the disease. A child of a parent with familial amyloidosis has a 50-50 chance of developing the disease.

Amyloidosis can involve any organ or system in the body. The heart, kidneys, gastrointestinal system, and nervous system are affected most often. Other common sites of amyloid accumulation include the brain, joints, liver, spleen, pancreas, respiratory system, and skin.

Causes and symptoms

The cause of amyloidosis is unknown. Most patients have gastrointestinal abnormalities, but other symptoms vary according to the organ(s) or system(s) affected by the disease. Usually the affected organs are rubbery, firm, and enlarged.

Heart

Because amyloid protein deposits can limit the heart's ability to fill with blood between beats, even the slightest exertion can cause shortness of breath. If the heart's electrical system is affected, the heart's rhythm may become erratic. The heart may also be enlarged and heart murmurs may be present. Congestive heart failure may result.

Kidneys

The feet, ankles, and calves swell when amyloidosis damages the kidneys. The kidneys become small and hard, and kidney failure may result. It is not unusual for a patient to lose 20-25 pounds and develop a distaste for meat, eggs, and other protein-rich foods. Cholesterol elevations that don't respond to medication and protein in the urine (proteinuria) are common.

Nervous system

Nervous system symptoms often appear in patients with familial amyloidosis. Inflammation and degeneration of the peripheral nerves (peripheral neuropathy) may be present. One of four patients with amyloidosis has carpal tunnel syndrome, a painful disorder that causes numbness or tingling in response to pressure on nerves around the wrist. Amyloidosis that affects nerves to the feet can cause burning or numbness in the toes and soles and eventually weaken the legs. If nerves controlling bowel function are involved, bouts of diarrhea alternate with periods of constipation. If the disease affects nerves that regulate blood pressure, patients may feel dizzy or faint when they stand up suddenly.

Liver and spleen

The most common symptoms are enlargement of these organs. Liver function is not usually affected until quite late in the course of the disease. Protein accumulation in the spleen can increase the risk of rupture of this organ due to trauma.

Gastrointestinal system

The tongue may be inflammed, enlarged, and stiff. Intestinal movement (motility) may be reduced. Absorption of food and other nutrients may be impaired (and may lead to malnutrition), and there may also be bleeding, abdominal pain, constipation, and diarrhea.

Skin

Skin symptoms occur in about half of all cases of primary and secondary amyloidosis and in all cases where there is inflammation or degeneration of the peripheral nerves. Waxy-looking raised bumps (papules) may appear on the face and neck, in the groin, armpits, or anal area, and on the tongue or in the ear canals. Swelling, hemorrhage beneath the skin (purpura), hair loss, and dry mouth may also occur.

Respiratory system

Airways may be obstructed by amyloid deposits in the nasal sinus, larynx and traches (windpipe).

Diagnosis

Blood and urine tests can reveal the presence of amyloid protein, but tissue or bone-marrow biopsy is necessary to positively diagnose amyloidosis. Once the diagnosis has been confirmed, additional laboratory tests and imaging procedures are performed to determine:

* which type of amyloid protein is involved

* which organ(s) or system(s) have been affected

* how far the disease has progressed

Treatment

The goal of treatment is to slow down or stop production of amyloid protein, eliminate existing amyloid deposits, alleviate underlying disorders (that give rise to secondary amyloidosis), and relieve symptoms caused by heart or kidney damage. Specialists in cardiology, hematology (the study of blood and the tissues that form it), nephrology (the study of kidney function and abnormalities), neurology (the study of the nervous system), and rheumatology (the study of disorders characterized by inflammation or degeneration of connective tissue) work together to assess a patient's medical status and evaluate the effects of amyloidosis on every part of the body.

Colchicine (Colebenemid, Probeneaid), prednisone, (Prodium), and other anti-inflammatory drugs can slow or stop disease progression. Bone-marrow and stem-cell transplants can enable patients to tolerate higher and more effective doses of melphalan (Alkeran) and other chemotherapy drugs prescribed to combat this non-malignant disease. Surgery can relieve nerve pressure and may be performed to correct other symptom-producing conditions. Localized amyloid deposits can also be removed surgically. Dialysis or kidney transplantation can lengthen and improve the quality of life for patients whose amyloidosis results in kidney failure. Heart transplants are rarely performed.

Supportive measures

Although no link has been established between diet and development of amyloid proteins, a patient whose heart or kidneys have been affected by the disease may be advised to use a diuretic or follow a low-salt diet.

Prognosis

Most cases of amyloidosis are diagnosed after the disease has reached an advanced stage. The course of each patient's illness is unique but death, usually a result of heart disease or kidney failure, generally occurs within a few years. Amyloidosis associated by multiple myeloma usually has a poor prognosis. Most patients with both diseases die within one to two years.

Prevention

Genetic couseling may be helpful for patients with hereditary amyloidosis and their families. Use of Cholchicine in patients with familial Mediterranean fever has successfully prevented amyloidosis.

Key Terms

Amyloid
A waxy, starch-like protein.

Peripheral nerves
Nerves that carry information to and from the spinal cord.

Stem cells
Parent cells from which other cells are made.

For Your Information

Resources

Organizations

* Amyloidosis Network International. 7118 Cole Creek Drive, Houston, TX 77092-1421. (888) 1AMYLOID.

* National Organization for Rare Disorders. P.O. Box 8923, New Fairfield, CT 06812-8923. (800) 999-6673.


what i miss not the stress and other situations that happened

hey ya all

i hope this finds you all doing well i am doing pretty good pain level is pretty high from stress and other things also, am waiting for wend impatient as heck to get my pain meds filled, i know i will be fine until then but am sort of worried about getting thru another day like today,. pain level was a 9 and a half this morning i could not literely move the pain was so bad i need to have my meds asap and i still have over 48 hours to go darn it,


is colder than heck tonight suppose to be down in the teens brrrrr they said snow by tomorrow night ugh just what i don;t need i HATE snow with a passion it sucks bad wish it was spring. i took some pics of the kittys today will upload them soon but in the mean time here is a couple i took last week hope all is well with you to all my friends here on my blog and from other places i no longer belong to(yea me) i do miss you and would love to keep in touch take care dear ones and remember i love you guys, , sometimes in life we have to do what we have to do and i felt spied upon there seemed everytime i posted something that someone thought i was making money(please if ya all had seen what i sold at such a lost you would so not be going there) anyways is why i left got tired of it so if ya want to keep in touch drop me a email now and then take care hugs and love vicki

happy birthday mom

i can't believe it has been 17 months since you died, i miss you more and more every day i am doing my hardest to make things good for everyone and i feel i am failing. your son and i fight constantly about stupid things and dad has been so ill is sad seeing him suffer i feel he is giving up and wanting to come to be with you, i am lost without you mom you were always my rock and i miss you so much i can hardly stand it. i know it was your time to stop suffering so bad and be with jesus and i know in my heart i am glad you are not suffering but your family misses you more and more each day, not a day goes by that i don;t talk to you i hope you can hear me cause if i have no one to talk to i would be lost, i have all of my wonderful friends i have met thru the years people who are there for me when they can be as i try and be with them but i need you mom i need your loving spirit your happy self i am lost without you. be at peace though i know you so deserve it, your loving daughter vicki

i hate fridays

seems all i did today was run into people who did not know what they were doing , i know everyone is so excited cause is the weekend but come ON give me a break, little brat girl who i said hi to at kMart and you ignored me, i should have reported you to your boss you are suppose to be cordial to the customers despite your attituda i said hi. so kiss my butt



am tired and when i came home cooked dinner and despite my trying to please hubby he complains so he can kiss having a homemade meal anytime soon slim to none
i am tired and not going to post much more but hopefully tomorrow i will feel better am sooo tired have a great weekend dear friends and those who are buttheads stuff it sideways

happy new year

happy new year to all of you my dear friends and family, well the year started out with a bang i had a abbsess tooth and of course no one was in. so i had to suffer all thru new years eve, new years day and the next 4 days till monday when i was able to get into the dentist. i was feeling a wee better on sunday but was very shaky and i was kind of worried, went to the dentist monday and he opened up the tooth and immediatly relief, only bad thing was i had a full blown panic attack and that is something i have never had before in public, i shook like a babys rattle. really freaked me out. they were very understanding about it but it was mortifing for me i just could not stop shaking. luckily hubby brought me or otherwise i would still be there lol

if ya all would pray for my fil i would sooo appreciate it, he is not doing well and honestly i don;t think he is going to get much better, he pretty much has given up we try and encourage him but i know how hard it is for him he figures what does he have to look forward to, his wife is gone, his 2 brothers are gone, he kind of forgets we are here i think sometimes and honestly unless you know a sicillian italian family, his family is his parents brothers and sister. i know we are family and he loves us but he always talks about his family "back home" in michigan where he has not lived in 60 years. and he just sort of takes us for granted i guess. but we know he loves us is just old school. so when he has no one is because they are gone not us.

i tried to talk to him last week about where he would want to be buried and he told me next to mom so now we need to get him better enough so he can take care of buying the plot now and getting things arranged. is not like we can afford it anyways and i know that beings as my hubby is a only child then he will recieve the money in the bank ect. but it would be so much easier if it was all paid for and done , i know I am going to have to be the one who will have to take care of having him buried. an is not what i am looking forward to. i helped him with mom because he needed help but it killed me to do it

also please send in boats washington state is under a flood watch the entire puget sound area is getting record numbers of rain, so far today we are at 3 in said we could get 4 to 8 more tonight and tomorrow not good at all please pray for our citizens wish i could bottle it up and send to anyone who needs it in draught areas well i have rambled enough for tonight i wish all of you who read my blog the best of 2009 may your year be filled with sunshine and roses happy times and lots of love, may your dreams come true in all you hold dear to your heart. those with children keep them close to your heart they grow up and away oh so fast if for some reason you see a ark floating by watch for me to be in it sheesh we need sunshine not rain blessings on all who read this and god bless all who believe in him and even those who don't LOL gotcha didn't i hehe just kidding with ya all blessings on all who read and if you do read my blog stop in and say hi i would love to know who actually is reading besides those i have as faithful friends love to you all peace and joy and happiness. love vicki