In March 2016 we sadly lost our precious daughter Sophie at 35 weeks, tests have indicated that this was probably due a blood clot developing near her cord. I have Antiphospholipid Syndrome (also known as Hughes Syndrome or sticky blood) which wasn’t discovered until after Sophie was born sleeping. You can read Sophie’s story here.
But, what is being done to treat Antiphospholipid/Hughes Syndrome? And what research is in place to find things to help someone with this condition? I recently came across ‘The London Bridge Hospital’ website, they are a private hospital which specialises in treating Lupus and Hughes syndrome as well as conducting clinical research.
From The London Bridge Hospital website ‘In 1983, our group described a condition in which there was an increased tendency to blood clotting. Such clots can occur at any time, and can affect veins or arteries anywhere in the body. During pregnancy, clotting of the placenta results in a tendency to miscarriage – some women suffering a dozen or more miscarriages before correct diagnosis and treatment. Features include leg and arm clots (DVTs), headache and migraine (leading in some to stroke), memory loss, chest pain, cold circulation. We initially reported the condition in a group of lupus patients but soon recognised that it could occur in individuals without any evidence of lupus’
Clinical Studies for Antiphospholipid (Hughes) Syndrome Research
Units throughout the world are researching Antiphospholipid Syndrome; The unit at St Thomas’ obtains some funding from the Hughes Syndrome Foundation and publishes up to 40 research papers each year; and The London Bridge hospital is now carrying out studies with groups in America, Argentina, Brazil, France, Italy, Japan, Portugal and Spain. The International Antiphospholipid Syndrome meeting (Dr Hughes first started this in 1985) is now in its 12th meeting, and it attracts up to 1000 doctors and researchers. The discovery of Antiphospholipid Syndrome in obstetrics has meant that the odds of carry a baby to term has increased dramatically; before the discovery patients only had a 20% chance of a successful pregnancy but treatment patients now have an 80% chance.
The aim of treatment is to ‘thin’ the bloody so that the tendency to clot is reduced, this is achieved with anticoagulant medication. There are currently three main anticoagulant medications (aspirin, heparin or warfarin) and for most patients one low dose aspirin (75mg) a day is enough to stop the blood from clotting. Heparin (such as Fragmin) is a very effective anticoagulant and is offered in injection form. It cannot be used for long term treatment due to an increased risk of osteoporosis. It is, however, used in some Antiphospholipid Syndrome pregnancies, as warfarin is potentially toxic to the developing baby.
- Low dose aspirin (baby aspirin) – at a dose of between 75mg to 100mg a makes the blood platelets less sticky.
- Side effects are rare (indigestion; allergy especially in asthmatics)
- Safe in pregnancy
- Newer “low molecular weight” heparin (such as Fragmin) has replaced older preparations
- Only available as injection
- Used to treat thrombosis, prior to warfarin use
- Safe in pregnancy
- Warfarin is a safe and effective medicine; despite being dismissed as ‘rat poison’ by some journalists
- Side effects are rare – the only vital issue is to keep the dosage correct
- The thinning of the blood achieved by warfarin is measured on an ‘International’ scale called ‘INR’ ‘Normal’ is “1” – half thick blood is “2” and one third blood is “3”
- Not allowed in pregnancy