Welcome to the forum
I am sorry that Cassandra has been frightened by the appearance of this so called and misnamed " lupus anticoagulant". The term refers to autoantibodies called anti phospholipids which were first identified in lupus patients, but don't necessarily mean the person has lupus. More people have them who dont have lupus. About one third of those with lupus also have these antiphospholipid antibodies.
However, Cassandra is apparently being treated already for an autoimmune connective tissue disease of some sort. Lupus is one of this group of diseases.
If there is some doubt about exactly which disease she has, the appearance of these antibodies might tend to confirm the diagnosis but the important thing is to get treated as necessary to control the disease and relieve the symptoms whatever they are. The presence of these antibodies doesn't necessarily mean she is somehow worse off than she already is.
When somebody says they have lupus the first question has to be "How does it affect you?", because there are many possible symptoms and many degrees of severity, depending on what parts of the body are affected and how severely.
It is reckoned that only one third of people with these antibodies actually suffer from them
Cassandra's doctors would have to determine how significant the antibodies are in her case, how they are affecting her right now, if at all. People can have the antibodies without suffering any ill effects from them.
"Lupus anti coagulant" is also a misnomer because it suggests that the antibodies can cause bleeding but the opposite is true - they can cause clotting events, thrombosis, miscarriage, strokes of various sorts and a whole host of other less dramatic symptoms such as "brain fog" - difficulties with memory and thought processes - to name but one.
The trouble with looking things up on line is that information focuses on the worse cases and in our anxiety we in turn focus on the worse cases. In a way this forum also deals with worse cases because all those people who are leading pretty normal lives with their symptoms well controled don't usually post here. However it is a very good source of experienced information and usually reassurance.
It is rather important to have a good understanding of how your lupus is affecting you and how it might affect you, what to look out for. Nothing is worse than ungrounded fears. Information empowers & helps to feel in control of the disease and to get the best out of one's doctors by developing a good dialogue with them. I hope her doctors are ready to talk and explain. Try to develop the habit of asking questions and expressing fears.
If the doctors decide that these antibodies are causing trouble they will treat with blood thinners of various sorts depending on what they judge necessary. It might be nothing more than a low dose aspirin.
If there are symptoms associated with these antibodies, the condition is called APS, short for antiphospholipid syndrome. In the UK it is often called Hughes Syndrome in honour of the lupus specialist who first identified the syndrome and understood the possible significance. Sometimes it's called
'sticky blood'.
I expect Cassandra will be moving out of pediatric care very soon. Will she transfer to St Thomas or another lupus specialist centre?
She is very welcome to post here herself ~ we have several members her age including some who have APS. It is comforting to know that other people are going through similar experiences and get encouragement and inspiration to lead fullfilled lives despite the problems posed by disease.
Please keep in touch and let us know how she gets on and of course don't hesitate to ask for any help we can give you.
All the very best
Clare
I am sorry that Cassandra has been frightened by the appearance of this so called and misnamed " lupus anticoagulant". The term refers to autoantibodies called anti phospholipids which were first identified in lupus patients, but don't necessarily mean the person has lupus. More people have them who dont have lupus. About one third of those with lupus also have these antiphospholipid antibodies.
However, Cassandra is apparently being treated already for an autoimmune connective tissue disease of some sort. Lupus is one of this group of diseases.
If there is some doubt about exactly which disease she has, the appearance of these antibodies might tend to confirm the diagnosis but the important thing is to get treated as necessary to control the disease and relieve the symptoms whatever they are. The presence of these antibodies doesn't necessarily mean she is somehow worse off than she already is.
When somebody says they have lupus the first question has to be "How does it affect you?", because there are many possible symptoms and many degrees of severity, depending on what parts of the body are affected and how severely.
It is reckoned that only one third of people with these antibodies actually suffer from them
Cassandra's doctors would have to determine how significant the antibodies are in her case, how they are affecting her right now, if at all. People can have the antibodies without suffering any ill effects from them.
"Lupus anti coagulant" is also a misnomer because it suggests that the antibodies can cause bleeding but the opposite is true - they can cause clotting events, thrombosis, miscarriage, strokes of various sorts and a whole host of other less dramatic symptoms such as "brain fog" - difficulties with memory and thought processes - to name but one.
The trouble with looking things up on line is that information focuses on the worse cases and in our anxiety we in turn focus on the worse cases. In a way this forum also deals with worse cases because all those people who are leading pretty normal lives with their symptoms well controled don't usually post here. However it is a very good source of experienced information and usually reassurance.
It is rather important to have a good understanding of how your lupus is affecting you and how it might affect you, what to look out for. Nothing is worse than ungrounded fears. Information empowers & helps to feel in control of the disease and to get the best out of one's doctors by developing a good dialogue with them. I hope her doctors are ready to talk and explain. Try to develop the habit of asking questions and expressing fears.
If the doctors decide that these antibodies are causing trouble they will treat with blood thinners of various sorts depending on what they judge necessary. It might be nothing more than a low dose aspirin.
If there are symptoms associated with these antibodies, the condition is called APS, short for antiphospholipid syndrome. In the UK it is often called Hughes Syndrome in honour of the lupus specialist who first identified the syndrome and understood the possible significance. Sometimes it's called
'sticky blood'.
I expect Cassandra will be moving out of pediatric care very soon. Will she transfer to St Thomas or another lupus specialist centre?
She is very welcome to post here herself ~ we have several members her age including some who have APS. It is comforting to know that other people are going through similar experiences and get encouragement and inspiration to lead fullfilled lives despite the problems posed by disease.
Please keep in touch and let us know how she gets on and of course don't hesitate to ask for any help we can give you.
All the very best
Clare
