How do I find information on mastocytosis in the UK?

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Anyone know if there is a website with helpful information on Mastocytosis in the UK?
There is currently a worldwide group, largest collection of masto patients out there, through the Mastocytosis Society - www.tmsforacure.org

If the masto patient is a child, try www.mastokids.org  (+ info)

How to know your child has Mastocytosis?

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I have twins and one of the are very sick and have symptom of this disease and I am scared about what may happen to him if he doesnt get the correct help for it and he stays sick longer.
What do I do? I have gotten to the point that I am not sleeping bc he wakes up 2 times a night and he is always hungery and he is not going to the bathroom like normal and he is always sick with running a fever and I just cant get him better.
I need help please
Symptoms
In some rare cases chemicals released by mast cells cause changes in the immune system leading to typical allergy symptoms such as:

Itching
Abdominal cramping
Anaphylaxis (shock from allergic or immune causes)
When too many mast cells exist in a person's body, the additional chemicals can cause:

Skin lesions
Abdominal discomfort
Episodes of very low blood pressure (including shock) and faintness
Bone or muscle pain
Nausea and vomiting  (+ info)

anyone out there have a baby with mastocytosis?

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I have a son, he has mastocystosis, I haven't been able to connect with other parents that have childern with the same condition, does anyone know of any support groups? In the southern california area?
I had mastocystosis and found that there are some links for help, support and information on [email protected]. I'm in SoCal too, but do not know of any local support groups, but will put out some feelers to see whether anyone else knows of any. For the time being, join the urticaria group, make a posting with your question and do a query on infant mastocytosis. I feel for you, I cannot even imagine what it would be like to be a baby with masto, it was hard enough being an adult taking 8 ampules of gastrocrom a day! Good luck and God bless.

There are support groups listed on the Mastocytosis Society webpage: http://tmsforacure.org/  (+ info)

Anyone in Australia that have Mastocytosis?

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Diagnosed about 2 years ago, currently 20 years old, and need some information that would help or cure this disease. Any information would be appreciated, as i am in Australia which there is very little knowledge of the disease.
I hope this helps  (+ info)

6 month old baby with mastocytosis will chlorphenamine help?

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No idea but I hope your baby recovers and will be completely healthy soon. You need to ask his doctor this. Here is a link about it though.

http://familydoctor.org/online/famdocen/home/common/skin/disorders/441.html

The good news according to this website is:
"It's usually mild in children, and they often outgrow it."

Good luck!!  (+ info)

am i suppose to panic that i found out my daughter has mastocytosis?

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my 5 year old daughter has mastocytosis. she a very great kid,,, she my number one fan. please share me your ideas and all
No, it seems to be quite treatable and survivable, especially in a child. http://familydoctor.org/441.xml

Here's a support group and links to loads of information: http://www.angelfire.com/ks/kctmsmastosupport/  (+ info)

Anyone in Australia and have Mastocytosis?

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Hello,
we have just moved to Australia and looking to get in touch with anyone with mastocytosis or systemic mastocytosis.

My son has systemic mastocytosis.
J
Hi, We've just moved to Melbourne. My daughter (18yrs) is currently undergoing testing for Mastocytosis.
There is a contact person in Western Australia, these are the contact details. Good luck!


http://www.tmsforacure.org/patientcontacts/waustralia.shtml
Western Australia Patient Contact

Leonie O'Connor
Western Australia, Australia
[email protected]


Kind regards

Jenny Herd  (+ info)

i have a child with mastocytosis need info?

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I would really appreciate it if there is any parents out there who have had experience with this and can give me some information from a day to day experience (any dos and donts) I want to put my son into baby swimming lessons but not sure if this will agrovate his skin does anyone have any experience with this?
Everything I'm seeing doesn't recommend swimming. I found a website, though, that has a lot of information on this condition as well as links to support groups: http://tmsforacure.org/index.shtml  (+ info)

Survival Rate of patients with systemic Mastocytosis?

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someone with this disease, mainly seen on the skin, however showed up in a bone marrow biopsy,......also had gull bladder removed, not sure if it was due to her recent childbirth,....or the disease,......being treated with chemo pills, at this time,....what is the survial rate, and how much "time' would this person have left in life?
Many people with systemic mastocytosis live long lives. did this person get it as a child or in adulthood? the odds are much better in children. Mastocytosis is not cancer by any means, although systemic masto is linked to lymphoma and leukemia. This person should be seeing a mastpcytosis specialist. there are several in the country. I know of one in Boston if you need contact info.  (+ info)

Please please tell me everything you know about systemic mastocytosis.?

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A friend of mine was just told she has systemic mastocytosis. What can you tell me about this disease? Do you know anyone who has it?
Systemic mastocytosis is caused when mast cells collect in the tissues and can affect organs such as the liver , spleen , lymph nodes , and bone marrow.

Mastocytosis is a disease characterized by the presence of too many mast cells in various organs and tissues.

Description

The body has a variety of free-roaming cell populations that function as immunogenic agents. Most immunogenic cells fall into the category of white blood cells, but some remain in tissues and are not found in the blood. Mast cells are such a group.
The cause of mastocytosis is unknown. People with systemic mastocytosis have bone and joint pain. Peptic ulcers are frequent because of the increased stomach acid stimulated by histamine. Many patients with systemic mastocytosis also develop urticaria pigmentosa. These skin lesions itch when stroked and may become fluid-filled.
Systemic mastocytosis is only symptomatically treated. There is no known treatment that decreases the number of mast cells within tissue.  (+ info)

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