Hughes Syndrome

Have you suffered from a number of miscarriages but don't know why? Are you prone to limb pain and circulation problems? If so, than you might be suffering from Hughes syndrome, an immune system disorder that can threaten the health of both you and your baby. Though a relatively new disease, Hughes Syndrome research has made many advances in the past decade. If you think that you may be suffering from the syndrome, speak with your health care provider and seek appropriate treatment.

What is Hughes Syndrome?
Hughes syndrome is an illness that causes "sticky blood". Often seen in lupus patients, people suffering from Hughes syndrome have thicker-than-normal blood, due to the fact that their blood platelets tend to stick to one another. This sticky blood can be very dangerous, and puts patients at risk for circulation problems, blood clots, and recurrent miscarriage. Hughes disease is sometimes called Antiphospholipid Syndrome, after the type of antibodies that cause the stickiness of the blood.

Cause of Hughes Syndrome
Hughes syndrome is caused by the presence of antiphospholipid antibodies in your bloodstream. Antiphospholipid antibodies increase the activity of your immune system, causing your blood to clot too much. It also reduces the amount of annexin-V and prostacyclin in your body, which are necessary to help thin your blood. If antiphospholipid antibodies are found in your bloodstream, it is usually a good indicator that you are suffering from Hughes syndrome. However, up to 2% of the healthy population also have antiphospholipid antibodies in their blood.

Types of Hughes Syndrome
There are two types of Hughes Syndrome:

  • primary Hughes syndrome, in which the illness appears without lupus
  • secondary Hughes syndrome, in which the illness manifests as a symptom of lupus

Symptoms of Hughes Syndrome
The symptoms of Hughes syndrome are sometimes hard to discern, and many patients don't realize that they have it until they suffer from a blood clot. Other Hughes syndrome symptoms include:

  • unexplained and recurrent miscarriages
  • headaches and migraines
  • progressive memory loss
  • epilepsy
  • cold skin
  • purple-blue discoloration of the skin, particularly around the knees and elbows

Diagnosis of Hughes Syndrome
Hughes syndrome can be diagnosed fairly easily. Your doctor will ask you about any symptoms you may have had, including any blood clotting or miscarriages. A blood test will then be performed looking for the presence of antiphospholipid antibodies. High levels of these antibodies generally indicate Hughes syndrome.

Hughes Syndrome and Pregnancy
If you are suffering from Hughes syndrome, you should receive treatment before trying to conceive. Because your blood is so sticky, it might not be able to get through the very thin veins in the placenta. This could cause blood clots in the placenta, which may prevent your baby from getting the nourishment she needs to grow and develop. Additionally, Hughes syndrome is often associated with recurrent, late-term pregnancy loss.

If you have Hughes syndrome, it does not mean that you won't ever be able to have a child. Women who receive treatment during pregnancy often have pregnancy success rates of over 85%. Women have given birth to children even without treatment, though this is not recommended, as Hughes syndrome can increase your risk for premature birth and preeclampsia.

Complications of Hughes Syndrome
Hughes syndrome can result in a number of complications, especially if it remains untreated. Complications include:

  • blood clots that prevent blood from getting to vital organ
  • heart attack
  • stroke
  • blindness

A particularly worrisome complication of the syndrome is called Catastrophic Antiphospholipid Syndrome. This form of Hughes syndrome causes a number of blood clots to occur simultaneously throughout the body. This can be life-threatening.

Treatment for Hughes Syndrome
Hughes syndrome can be treated successfully using straightforward medications.

Daily doses of aspirin are usually enough to keep most patients' blood from clotting. Aspirin helps to make blood platelets less sticky, which prevents your blood from clotting. There are few side effects except for nausea and stomach irritation. Aspirin is usually the recommended treatment during pregnancy.

Heparin is an anticoagulant used to help thin your blood. It works well in preventing blood clots, but it is only available through injections. It is not safe for long-term use because it causes bone loss, which puts you at a risk for osteoporosis. Heparin is occasionally used in pregnancy when aspirin is ineffective or can't be tolerated.

Warfarin is referred to as the "gold standard" of anticoagulant medicines. If you have already suffered from a blood clot, you will likely receive warfarin therapy to help thin your blood. Warfarin is very safe for general use but is not recommended for pregnant women. Also, users of Warfarin require close monitoring in order to ensure the proper dosage is being administered. Most patients perform self-prick tests every day to measure the thickness of their blood.

Visit our Pregnancy Compications forum to talk with other women who have Hughes Syndrome.

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