Thursday, 31 October 2013

Lupus awareness month! UBC #21

The month of October was Lupus Awareness Month so I have written this blog post to help spread the awareness of Lupus to you!

Why do I want to raise awareness of Lupus you ask?

My beautiful mother (pictured below) is one of the few sufferers in the UK with a form of the condition. I have gathered information from Lupus UK to give you an insight of the disease and I also have a description from my Mum describing her symptoms and living with Lupus. 

Lupus is a chronic and presently-incurable illness of the immune system, a condition in which the body's defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.

The danger of Lupus is that it can produce many symptoms and family doctors often fail to recognise it. Meanwhile, a number of major organs can be damaged in an irreversible way.

The causes of lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses.
Some 50,000 may have lupus in the UK and 90% of sufferers are female, mainly between the ages of 15 and 55.
With its many symptoms, lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and hopefully limit potential damage to the kidneys, heart, lungs or brain. Those diagnosed usually remain in medical care and receive ongoing treatment. 
Lupus can be triggered
  • at puberty
  • during the menopause
  • after childbirth
  • after viral infection
  • through sunlight
  • as a result of trauma
  • after a prolonged course of some medications
One or more triggers can set off the illness in people who may have susceptibility to lupus.
Lupus is often triggered in people where there is family history of lupus and/or other immune system illnesses such as arthritis, MS and rheumatism.
Lupus is neither infectious nor contagious

There is such a long list of symptoms to look out for here: 


Lupus is a type of self-allergy, a disease of many manifestations and each patients profile or list of symptoms may be different.  Several manifestations such as those listed below may suggest clinical evidence of a multi-symptom disease:

SKINRashes, Mouth Ulcers, Hair loss
JOINTSPain, redness, swelling
KIDNEYSAbnormal Urinanalysis
LINING MEMBRANESPleurisy, Pericarditis, Peritonitis
BLOODHaemolytic Anaemia, Leukopenia
LUNGSShortness of breath, cough
NERVOUS SYSTEMConvulsions, psychosis

In arriving at a firm diagnosis the physician will normally expect at least four of a list of 11 internationally accepted conditions to be present (either currently or at any time since the onset of the illness) which are;
  1. MALAR RASH – Fixed red rash over the cheeks
  2. DISCOID RASH – Red patches of skin associated with scaling and plugging of the hair follicles
  3. PHOTOSENSITIVITY – Rash after exposure to sunlight
  4. ORAL ULCERS – Small sores that occur in mucosal lining of mouth and nose
  5. SEROSITIS – Inflammation of the delicate tissues covering internal organs, and abdominal pain
  6. ARTHRITIS – Very common in lupus, usually pain in the joints and tendons
  7. RENAL DISORDERS – Usually detected by routine blood and urine analysis
  8. NEUROLOGICAL DISORDERS – Seizures or psychosis, balance problems
  9. HAEMOTOLOGICAL DISORDER – Haemolytic Anaemia, Leukopenia, Thrombocytopenia
  10. IMMUNOLOGIC DISORDER – Tests anti-DNA, anti-SM antibodies, antiphospholipid antibodies
  11. ANTI-NUCLEAR ANTIBODY (ANA TEST) – When found in the blood and the patient is not taking drugs, it is known to cause a positive test for lupus in most cases, but it is not necessarily conclusive


There is at present no cure for lupus but careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled, most patients being able to live a normal life span. Doctors will usually only keep the patient on high impact medication for as short a period as possible.

What is the future? 
Bold initiatives such as stem cell transplants are being experimented with, and the genetic background puzzle of lupus is gradually being uncovered. More significant developments are likely and new medications are gradually being introduced.

Medical knowledge increases all the time and there's no doubt that the lupus patient is having her/his illness under better control and management than ever before. Doctors are successfully tailoring medication now to individual patient need, and the future for the lupus patient looks ever more hopeful.

The message to you
There are many symptoms of lupus, differing from patient to patient which can easily cause a practitioner to lean towards a more comfortable or better-known ailment. Knowledge of the lupus condition is vitally needed for quick and accurate diagnosis that may prevent the onset of major organ damage.


Thank you for reading the vast information about Lupus! It is such a rare disease and symptoms can be passed raising awareness is so important! 

Here is an account from my Mother, Linda who is 52 years of age about living with Lupus. 

What I have is Mixed connective tissue disease which is an autoimmune disease and is considered an "overlap" of three diseases, systemic lupus erythematosus (lupus), scleroderma and polymyositis. 

People with MCTD experience symptoms of each of these three diseases. In many cases, this mixed set of symptoms is eventually dominated by symptoms characteristic of one of the three illnesses, especially scleroderma or lupus. I am dominated by Lupus and was diganoised in 1998 due to not recovering from flu and ended up in hospital because my musle weakness was so bad I could not walk. 

After 5 years of treatment suppressing my immune system I went into remission and since then only having slight symptoms at the moment. I have just recently had my 6 monthly check as is borderline positive so can go either way, go back into remission or have a flare up.

My symptoms are: 
• Joint pain and stiffness, with or without swelling 
• Muscle aches, pains, or weakness 
• Feeling very tired 
• Butterfly-shaped rash across the nose and cheeks 
• Other skin rashes 
• Anemia 
• Trouble thinking, memory problems, confusion 
• Sun or light sensitivity 
• Hair loss (slight at the moment) 
• Purple or pale fingers and toes from cold 
• Difficulty swallowing

I have a very positive outlook about this and don’t let it worry me but having aching joints and weakness in the muscles is not much fun, but grit my teeth and carry on.

Personally reading this information breaks my heart that my mum has to go through this on a day-to-day basis. If you were to meet my mum you would never know she was unwell and being with her all the time, she never ever complains or moans about any pains but they are there, she just has to live with them! 

Please help us spread the word and gain awareness of Lupus! 


  1. Thank you for your detailed and informative post. I've heard of lupus before, but never thought much about it until a woman (mother of four) at our church was diagnosed. All I knew was that she experiences fatigue, exhaustion, and was sensitive to light. Sometimes she couldn't get out of bed for days at a time. Your post has certainly helped me to understand the disease better. Thank you for raising my awareness!

  2. Thanks for sharing your story. I think that the sharing may help someone else who may need to be made aware. Awareness of the situation is half the battle. Thanks so much for sharing your experience

  3. As an autoimmune disorder (I'm a nurse by background) I've spoken with people from a local holistic wellness center in Tucson about lupus. They have an Fb page with contact information. I am not sure if they would be able to help directly, however, it may be possible.

  4. lupus used to be a rare disease.. now is very common. I wish that we could get to the bottom of it.

  5. thanks you for your informative post,i will share it to everyone,

  6. This blog i can tell in many ways is dear to your heart. Thank you for sharing your families story and educating on this disease.

  7. Both my mum and I have various Auto immune diseases and have been investigated for Lupus. I wish your mum all the best in her health and hope her daily battles only get easier!

    Very informative post! Thanks for sharing!

  8. Wow! What a detailed post about lupus! Thank you for sharing! Very informative!

  9. I have heard of lupus before but really didn't know what it was. Thanks for raising awareness!

  10. What a scary disease thanks for spreading awareness about Lupus
    Dawn D

  11. We have a friend who suffers from it.. sometimes she cannot even move..

  12. Thank you for sharing your story.
    I will share it with my uncle who have Lupus.