Hughes Syndrome is a little-known disease more common than Parkinson’s and multiple sclerosis - but have you ever heard of it?
The beginning of May signals the start of Hughes Syndrome Awareness Month. A virtually unknown but widespread condition, Hughes Syndrome, also known as Antiphospholipid Syndrome (APS) or ‘sticky blood’ affects around 1% of the population making it more common than Parkinson’s disease and multiple sclerosis, and offers an explanation for numerous medical symptoms that may otherwise go unresolved.
Hughes Syndrome is an autoimmune disease which affects the blood’s ability to clot. An overactive immune system produces antiphospholipid antibodies which cause the blood to clot too quickly in both veins and arteries anywhere in the body. The condition can affect anyone, but sufferers are usually between the ages of 20 and 50, while it is significantly more common in women (for every two men with Hughes Syndrome there are seven women affected).
The incidence of Hughes Syndrome is difficult to gauge due to it often going undetected, however studies offer a conservative estimate that at least 1% of the population suffer from the condition. This translates to 600,000 people in the UK alone, making the syndrome significantly more common than Parkinson’s disease and multiple sclerosis. Further to this, Hughes Syndrome can be attributed to approximately:
- 1 in 5 young (under 50) strokes
- 1 in 5 young DVTs
- 1 in 5 young heart attacks
- 1 in 5 recurrent miscarriages
Despite the prevalence of the condition and its link to serious medical issues, Hughes Syndrome remains little known among both the general population and medical professionals. Professor Graham Hughes, Consultant Rheumatologist at London Bridge Hospital, who discovered the syndrome comments: “Awareness of Hughes Syndrome remains minimal for a number of reasons. Discovered just over 30 years ago, the condition is still relatively new in the medical domain and thus far there has only been limited research conducted. In addition to this, many medical students are still not being taught about the condition, meaning that new and existing doctors may remain ignorant of the symptoms.”
Due to limited knowledge of the condition, Hughes Syndrome remains frequently undetected or misdiagnosed due to symptoms that can be attributed to better-known disorders, most commonly Multiple Sclerosis or Alzheimer’s. According to a recent survey among Hughes Syndrome cases, 33% of sufferers were initially diagnosed with MS. Typicalsymptoms of Hughes Syndrome are:
- Headache and migraine
- Memory problems
- Dizziness and balance difficulties
- Visual disturbances
- Blotchy skin (livedo reticularis)
- Arthralgia (joint pain)
The crossover in symptoms of Hughes Syndrome, MS and Alzheimer’s leads to frequent misdiagnosis, particularly in patients who fit the profile for the two more commonly known conditions. Misdiagnosis with a debilitating and degenerative illness such as Alzheimer’s or MS causes unnecessary trauma to a patient, while any treatment administered is ultimately ineffective.
Although Hughes Syndrome all too often goes undetected, it is in fact simple and cheap to test for and easily treated in many cases. Professor Hughes expands: “A test for Hughes Syndrome costs only a few pounds, however patients are usually denied this simple means of diagnosis until they have suffered serious consequences such as stroke or heart attack. Education surrounding early indications of the condition is vital in order to increase test rates and begin treatment before more serious symptoms transpire. Treatment of Hughes Syndrome can be as simple as a daily aspirinintake, and be effective almost immediately.”
While aspirin is commonly used to treat the disease, other anticoagulants such as warfarin or heparin may be necessary in some cases. However, with the correct treatment it is possible to control the symptoms of the condition and lead a normal life.
For more information on the symptoms and treatments for Hughes Syndrome, please visit: http://www.hughes-syndrome.org/
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