Fabry Disease (home, education, best)

[ribbets]

My wife and both my sons have been diagnosed with Fabry's do any other mainers here on the forum have this problem

[miu]

It's a very rare inherited condition. It's probably best if your sons don't have kids.

Maybe your family doctor can help you find a local support group to join. But since it's such a rare condition that you should search to find an internet support forum to join.

[AnnapolisSailor]

Fabry disease - Patient support - For patients and families - Genetics Home Reference

There appears to be multiple helpful hyperlinks Including patent and family support and education from this dot gov website.

Best wishes,
Nurse researcher

[birdinmigration]

Originally Posted by miu

It's a very rare inherited condition. It's probably best if your sons don't have kids.

Maybe your family doctor can help you find a local support group to join. But since it's such a rare condition that you should search to find an internet support forum to join.

Whoah. That is never something you should say to someone. That is just brutal.

It is up to their doctor to make recommendations for their family. Nobody else has the right to weigh in on their personal decisions.

OP, I wish you and your family all the best.

[ribbets]

There is a vast support network and they are already in treatment at a local hospital and have infusions every 2 weeks. The posting was just a query to see if any of the Maine members were inflected with Fabry. It was never diagnosed correctly until my youngest son visited our eye doctor and the doctor had just returned from a seminar and saw the swirls in the eyes( it had been called every thing from Lyme to MS and about a hundred other things)
But it is treatable and there are dealing with it.

[miu]

Originally Posted by birdinmigration

Whoah. That is never something you should say to someone. That is just brutal.

Why would anyone want to chance bring children into this world if their children could have this disease? Especially when there are so many babies and children in need of adoption? And it's a burden on the rest of society to fund their care.

Fabry disease is an inherited disorder that results from the buildup of a particular type of fat, called globotriaosylceramide, in the body's cells. Beginning in childhood, this buildup causes signs and symptoms that affect many parts of the body. Characteristic features of Fabry disease include episodes of pain, particularly in the hands and feet (acroparesthesias); clusters of small, dark red spots on the skin called angiokeratomas; a decreased ability to sweat (hypohidrosis); cloudiness of the front part of the eye (corneal opacity); problems with the gastrointestinal system; ringing in the ears (tinnitus); and hearing loss. Fabry disease also involves potentially life-threatening complications such as progressive kidney damage, heart attack, and stroke. Some affected individuals have milder forms of the disorder that appear later in life and affect only the heart or kidneys.

[brfire]

Originally Posted by miu

Why would anyone want to chance bring children into this world if their children could have this disease? Especially when there are so many babies and children in need of adoption? And it's a burden on the rest of society to fund their care.

And its no ones decision but their sons whether to have kids or not.

[birdinmigration]

Originally Posted by miu

Why would anyone want to chance bring children into this world if their children could have this disease? Especially when there are so many babies and children in need of adoption? And it's a burden on the rest of society to fund their care.

It is not up to you to tell anybody whether they or their family members 'should' have children or not.

It is not up to you to say anything about this at all if you can't be kind to a person in a dire situation.

Where is your heart?