Wednesday 27 June 2012

ALS Community





Dear ALS Community Member,


Nearly 450,000 pople are living with ALS today throughout the world. There are no effective treatments and no cure. However, there is hope. A growing number of treatments are in the pipeline. But a global disease requires a global solution.

Launched on World ALS Day, June 21, 2012, "Postcards" share stories of health professionals, scientists and patient advocates working to more effectively treat, care, and support people with ALS in different parts of the globe. In this first installment, we introduce you to scientists and advocates from Iceland, India, Ecuador and more. Click the image to the right or here to explore these and other "Postcards".

Managed by the ALS TODAY team at TDI, "Postcards" will be a growing online portal for you to learn about the global effort to end ALS. To suggest someone for inclusion in this new project, please contact us at info@als.net.

Sincerely,

Steve Perrin, Ph.D.
CEO & CSO
ALS Therapy Development Institute

Monday 18 June 2012



Professor Gabriel Panayi (formerly NRAS Chief Medical Advisor, now NRAS Patron), Emeritus Professor of Rheumatology, Guy’s, King’s, St Thomas’ School of Medicine and consultant rheumatologist Guy’s Hospital, London
 Original article: 02/07/2003
 Reviewed: 03/10/2011
 Next review due: 03/10/2014

Introduction By Ailsa Bosworth, Chief Executive, NRAS
If you think you may have rheumatoid arthritis (RA) or have just been diagnosed with RA, you will be feeling emotional, anxious and potentially afraid of finding out just what the future may hold in store for you. All this is perfectly understandable and I felt those things and many more when I was diagnosed over 30 years ago.
You therefore need to understand a few things before reading the following article:
The prognosis for people diagnosed with RA today is dramatically better than when I was diagnosed
With early, aggressive treatment, you can lead a more normal life than has ever been possible before
There are now very effective new drugs available if you fail conventional treatment
There are lots of further drugs in the pipeline and more research than ever before happening around the world
You have NRAS to support you and put you in touch with a volunteer ‘buddy’ who also has RA and has been through all the things you may be feeling right now, yet remains positive about the future.
Knowledge of your disease will help you to come to terms with it and to make the right decisions about your treatment
You can download this article and take it with you to the hospital next time you go, should this be helpful, and raise any particular question directly with your own rheumatology team.
NRAS is here for you and you can ring us at any time.
What is RA?
Professor Gabriel Panayi, now NRAS Patron

Rheumatoid arthritis is a serious disease if diagnosed late and/or treated inadequately.
I shall discuss the disease under the following headings:
What is it?
 How does it come about & present itself?
 How does RA damage joints?
 How is RA managed and what is involved?
 Goals of therapy

What is it?

Rheumatoid arthritis (RA) is a chronic, progressive and disabling auto-immune disease, affecting 580,000 people in England, which suggests that over 690,000 adults in the UK live with the condition.  It is a painful condition, can cause severe disability (this varies between individuals and depends on how severe/aggressive the disease is) and ultimately affects a person’s ability to carry out everyday tasks. The disease can progress very rapidly (again the speed of progression varies widely between individuals), causing swelling and damaging cartilage and bone around the joints. Any joint may be affected but it is commonly the hands, feet and wrists. It is a systemic disease which means that it can affect the whole body and internal organs (although this is not the case for everyone with RA) such as the lungs, heart and eyes.
It affects approximately 3 times more women than men and onset is generally between 40 - 60 years of age although it can occur at any age. There are around 12,000 children under the age of 16 with the juvenile form of the disease. We do not know what causes it although various ideas are examined later in this article. Cigarette smoking is an important precipitating factor. Furthermore, smoking makes the outlook for the RA worse. So far, we cannot cure it, but we now understand much more about the inflammatory process and how to manage it. RA is a lot more common than leukaemia and multiple sclerosis. However, because RA and its effects are not well publicised, awareness of the severity of the condition tends to be restricted to those who are directly affected or their carers and relatives.
The good news is that the prognosis today, if diagnosed and treated early, is significantly better than it was 20-30 years ago and many people have a much better quality of life in spite of having RA.
RA is economically costly. In fact, the total UK costs, including indirect costs and work related disability, are estimated to be approximately £3.8 - £4.75 billion per year. We now know that uncontrolled RA increases mortality through an increased risk of cardiovascular disease such as heart attacks and strokes; again the need for early treatment is imperative.
How does it come about?

A very common question asked by someone who first develops rheumatoid arthritis is, “Why me?” Although the cause of RA is unknown, some possible culprits including infections, viruses, diet and possibly injury, have not received strong scientific backing. As mentioned above smoking is undoubtedly an important factor in causing RA. Although rheumatoid arthritis has a genetic component, the possibility of passing the disease on to a child is extremely small.
How does it present?
The following are some of the more common symptoms of RA, but everyone is individual, and some people will present with only some of these symptoms, and may present with some other, less common symptoms.
 Joint swelling (often but not always affecting symmetrical joints, i.e. the same joint on both sides of the body)
 Pain
Morning joint stiffness
Poor sleep
Fatigue
Loss of weight
A feeling of having flu like symptoms
The diagnosis of early RA is very difficult. From your point of view you should bear the following in mind. Joint swelling should be present in at least two joints. Along with this joint swelling there is stiffness in the joints, particularly in the morning or after sitting for some time. Osteoarthritis (OA), or wear and tear arthritis, can also present with joint swelling and morning stiffness in the joints. However, the morning stiffness in osteoarthritis usually does not last longer than 30 minutes whereas in rheumatoid arthritis it is considerably longer. Patients with rheumatoid arthritis can wake up in the middle of the night with joint pain and stiffness. This does not happen in osteoarthritis. Fatigue is particularly pronounced in patients with rheumatoid arthritis and there may be loss of weight due to poor appetite – these are not features of osteoarthritis. If someone has some or all of the above features then they should consult their general practitioner. A relatively easy and cheap blood test, the ESR, will discriminate between RA and OA since it is increased in RA but not OA.


How does RA damage joints?

Despite current lack of knowledge regarding the trigger of rheumatoid arthritis, we know a lot about the mechanisms by which the inflammation in the joints leads to their destruction. The processes of inflammation and destruction are known by the technical term of ‘pathogenesis’. All medical treatments for rheumatoid arthritis are directed at suppressing one or other part of the joint damaging processes.

A normal joint is a complicated machine involved in movement. It has several parts as illustrated in the following image:

Normal joints provide movement that is effortless, requires little energy and is painless. In order to achieve this, a joint has to be adequately lubricated, just like the moving parts of a car. A joint is formed where two bones have to move one on each other as, for example, in the knee. The ends of the bones are covered with cartilage which is smooth so that one surface can glide over the other. The bone ends covered with cartilage are within the joint capsule, a tough coat keeping everything together. The lining of the capsule is called the synovium. It produces the joint fluid and is a very effective lubricant.
The normal joint lining is very thin. It has very few blood vessels in it and there are no white blood cells in it. In the inflamed rheumatoid joint, the lining is very different. It is very thick and is crowded with white blood cells that have entered it via new blood vessels as you can see from the next diagram. The white blood cells produce a large number of chemical substances that cause pain, joint swelling, and joint damage. These same chemicals, when released into the bloodstream, cause fatigue and general feelings of being unwell.

As a result of the entry of the white blood cells into the joint lining, they are activated and secrete substances that cause inflammation so that the joint is: swollen, hot, tender to touch, painful, functions poorly and may become deformed over time. It is the goal of every rheumatologist to try to prevent joint damage and the earlier and more aggressively someone with RA is treated, the better the long term prognosis.
The processes set in train by the white blood cells are also responsible for the damage to the cartilage and bone of the joint as can be seen from the diagram below:


To summarise the consequences of joint inflammation in the rheumatoid joint, see diagram below.
The capsule, the outermost layer of the joint, is normal in both rheumatoid arthritis and osteoarthritis;
The lining layer in the rheumatoid arthritis joint is swollen to many times its normal size;
There are increased amounts of joint fluid between the bone ends;
The inflamed synovial membrane eats into the bone and the cartilage. The damage of the bone is seen in the x-ray as an erosion.


The Consequences of RA to the individual
Pain
Stiffness in the joints after inactivity
Unpredictable ‘flares’ of inflammation
Fatigue
Psychological Effects: Anxiety
Depression
Disability: Loss of work
Loss of independence

More than the joints can be affected in RA
Other parts of the body can include: (but these areas are not affected in everyone with RA):
Eyes - dryness, inflammation
Lungs - fluid, fibrosis, nodules (rare)
Skin - nodules, ulcers
Heart - fluid, nodules, ischaemic heart disease
Blood - anaemia, low counts
Your blood vessels and RA

Rheumatoid arthritis is itself a risk factor for heart attacks and strokes. It is therefore important that you consult your general practitioner and your rheumatologist to prevent these complications from taking place. This is done by controlling the activity of RA, treating risk factors such as diabetes, high blood pressure and high cholesterol. If you are a smoker, you must make a very determined effort to STOP. For information on how to quit smoking, please visit the following NHS website: http://smokefree.nhs.uk/

How is rheumatoid arthritis managed and what is involved?
 Patient education and empowerment
Practical self-management to help deal with symptoms
Multi-professional team care
Drugs to control inflammation and disease progression
Surgery to deal with structural change
Specialist support to help live with the disease and its consequences
To help Symptoms
Education and support
Non-drug treatment including topical treatments and pain relieving strategies (rest and relaxation)
Physiotherapy
Occupational Therapy, painkillers, non-steroidal anti-inflammatory drugs (NSAIDs)
Joint injections
Pain Management Clinics
To Reduce Damage
Disease modifying therapy (DMARDs)
Steroids
Biologic Agents
Knowledge of the pathogenesis of rheumatoid arthritis has been gained by many years of patient scientific research and is highly important because only through this knowledge can effective drugs be developed that can suppress joint inflammation and damage. Drug treatment is indicated for rheumatoid arthritis to control inflammation and joint damage. Unfortunately, if this control is inadequate, joint damage can only be corrected by orthopaedic surgery. The challenge today is to control rheumatoid arthritis as effectively as possible from its early stages so as to prevent serious joint damage necessitating surgery. This has already been achieved with many rheumatology centres reporting that the number of patients going to orthopaedic surgery over the last 10 to 15 years has significantly declined.
Treatment makes an important difference to the symptoms of inflammation, damage to the joints, how people can cope with RA and lifespan.
Goals of therapy
 To relieve symptoms including fatigue, pain, swelling and stiffness
Prevent joint destruction, loss of joint function, deformity and disability
Preserve quality of life
Achieve clinical remission
The Rheumatology Team
It cannot be emphasised enough that the treatment of rheumatoid arthritis is a team effort involving many people. The critical therapeutic triangle involves the patient, the consultant, and the nurse practitioner. However, other members of the rheumatology team include physiotherapists, occupational therapists, chiropodists, podiatrists, orthotists, pharmacists, GPs and primary care nurses and orthopaedic surgeons. Some people also benefit from counselling services or by seeing a dietician, although currently these professionals are not automatically part of every rheumatology team. Patients, ie YOU, are part of the management team. Therefore, it may help for you to gain knowledge of the disease and of the drugs and procedures used for its treatment so as to be able to make rational decisions regarding treatment. By having this knowledge, you will also be an advocate for increased public and political awareness of the importance of this disease and the urgent need for adequate funding, both in terms of treatment and of the money needed for adequate research.
Effective Treatment needs to start early
We know that effective and early treatment of rheumatoid arthritis makes a very big impact on the subsequent course of the disease by improving quality of life and reducing joint damage. However, treatment should begin within 6 months of the onset of the disease or preferably even earlier, and it must be effective. We know that drugs and biologic treatments slow or even halt joint damage and improve the quality of life. Interestingly, methotrexate reduces the increased mortality of RA. This may also be true of anti-TNF alpha therapies. You will find further details of the treatments used in rheumatoid arthritis in other parts of the NRAS website. However I will cover the basics.
The drug management of rheumatoid arthritis is an established mode of treatment. This is achieved through the use of disease modifying anti-rheumatic drugs (DMARDs), which slow down the progression of the RA. Different strategies can be used:
DMARDs may be used alone. Single DMARDs that are available include methotrexate, (probably the commonest used), sulfasalazine and hydoxychloroquine. Leflunomide is a relatively recently introduced DMARD that is also often prescribed.
DMARDs are now increasingly used in combination therapies which are more effective than the use of single drugs, without increasing toxicity. One of the commonest used combination therapies is methotrexate combined with sulfasalazine and hydoxychloroquine.
The standard disease modifying drugs given as a first-line of treatment (such as methotrexate and sulfasalazine) are mainly given orally (though methotrexate is also available as an injection). The newer DMARDs, known as ‘biologics’ (which target several different proteins responsible for inflammation) are only prescribed when at least 2 standard DMARDs have been tried (one of which must be methotrexate) and the patient’s disease is not well-controlled.

It can take time to find the right combinationand doses of drugs to control an individual patient’s RA, as everybody is individual, and will react in different ways. However, with more drugs available than ever before, and a better understanding of how to treat the condition today, this disease can be very well-controlled by medication.
RA - The Challenge to Society - Summary
In summary therefore, rheumatoid arthritis is a major challenge to the individual patient and to society. It can be treated effectively if it is diagnosed early. This means better general practitioner education and early effective treatment. From the patient perspective, early rheumatoid arthritis may not easily be distinguished from other forms of less severe arthritis. The golden rules are:
IF YOU HAVE SWELLING OF MORE THAN TWO JOINTS AND WITH STIFFNESS IN THE JOINTS IN THE MORNINGS OF MORE THAN HALF AN HOUR THEN GO AND SEE YOUR GENERAL PRACTITIONER.
STOP SMOKING - IT WILL IMPROVE YOUR RA AND REDUCE RISK OF HEART ATTACKS AND STROKES.







Living with R.A. my life ...

Jean Luc Guislain - Rheumatoid Arthritis (Canada)
Posted at 12/01/27
Name: Jean Luc Guislain                      
Sex: Male
Country: Canada
Age: 58
Diagnoses: 1. Rheumatoid Arthritis 2. Hypertension level 1, low-risk
Admission Date: 2011-10-22
Days Admitted to Hospital: 28


Nine years ago, Jean developed pain in the left Achilles tendon and the pain was more severe after physical activity. He went to his local hospital for related examinations and Rheumatoid Arthritis was considered. The symptoms initially didn't affect his quality of life and he didn't receive treatment at that time. After a period of time, the pain spread to the right wrist and the forefinger on the right hand. The pain was more severe when the weather changed. The pain in the joints increased in October 2010, affecting his walking ability. There was limited movement in the left ankle and wrist joint. After taking Boswellia, Glucosamine, and Cod liver oil and other natural products, his condition improved. But the pain once again increased in early 2011, this time affecting his quality of sleep. There was swelling in the left ankle, wrist, elbow and the forefinger on the right hand.  There was limited movement in the left leg and obvious pain when the arms were in the pronated or supinated positions.
During the physical examination, Jean was alert and his speech was clear. The muscle strength of all four limbs was level 5. The tendon reflexes of all four limbs were normal. Jean limped on his left leg when he walked. The skin temperature was higher than normal. There was abnormal frictional rubbing in the left ankle joint when there was any movement. The coordinated movement examination of all four limbs was normal.
Jean received treatment in order to expand the blood vessels, nourishment for the neurons, anti-inflammatory medication and acesodyne. He also received treatment to improve his immune system and had the functioning of the organs stabilized. The blood pressure was monitored at the hospital, and the blood pressure reading was 140/150/90-100mmHg. Jean was diagnosed with hypertension level 1, low-risk. He was put on antihypertensive medication for treatment.
                     
After the completion of the treatment, Jean's blood pressure reading was stable. He now gets more sleep and the quality of sleep is better. The pain in the joints has been alleviated and the range of movement of the legs and arms has increased. The swelling in the joints and skin temperature around the swelling area has almost been restored to normal. The frictional rubbing in the joints when Jean exercises has been alleviated noticeably. When he walks, he no longer limps on his left leg.
Jean said his aches and pains were much less in a short time after the admission. He is satisfied with the outcome of the treatment.

 Dr. Terri Liu
198 Fengbao Road, Beijing, China 100160
Tel: +86-10-83616677 ext. 823
Fax: +86-10-83614989
Email: wustemcells@163.com





Contact Information
Case analysis:
Rheumatoid arthritis (RA) and ankylosing spondylitis are autoimmune diseases which lead to self immune system disorders, and the patient has an inherited tendency also. In traditional therapy, doctors prefer to use NSAID, immunosuppressors, immunomodulators and steroids to control this kind of disease. In the early stages, these medications can be useful, but still had no use in some refractory cases. And these medications have very strong side effects, such as bone marrow suppression, drug-induced liver disease and infection post immune implantation.
In recent years, scientists have developed a new method for treating autoimmune disease with mesenchymal stem cells implantation. It has several advantages:
1. The mesenchymal stem cells can differentiate into immune cells, repair the immune system, some of them after implantation can repair and replace the damaged cells and tissue.
2. The mesenchymal stem cells can secrete different kinds of cell factors which can withhold inflammatory mediators and cells, repair damaged joints and the synovium, and block the development of the disease effectively.
3. There is no risk of a rejection reaction, it is safe and effective and the most important thing is that the stem cells treatment has a very measurable, positive effect.
Although stem cell treatment has positive effects for these autoimmune diseases, the patient still needs a comprehensive and systematic treatment plan. Traditional therapy still plays a very important role in our treatment procedure: the stem cells need a proper environment in order to grow better so that the general medications can adjust the internal environment, prevent the further damage to the bone joints structure, suppress the abnormal immune function, and actively treat for complications, in fact, traditional therapy is a vital factor in ensuring the overall success of the treatment results.


Saturday 16 June 2012

Part Of My R.A. Story




My name is Khadene Christine Lalla born in Trinidad & Tobago December 16th 1975. I also write about myself in my blog because as of 2011 I was diagnosed with R.A. (rheumatoid arthritis) early stages but with some rapid progression . There were many changes that were taking place in my body, as a teenager there were problems which had doctors somewhat confused they did'nt know what to make off it. So come with me on my search into Chronic diseases and ways to stop or slow down progression.. One should not let sickness put a limit on what life has to offer you !

Positive Thoughts :

“Sometimes the most important thing in a whole day is the rest we take between two deep breaths.”

Etty Hillesum

A gift from me to you it maybe a sad song but positive words enjoy .... i made this video when i found out i had R.A ...

Friday 15 June 2012

Positive Thoughts :

You’ve given us Your Spirit, Lord,
 To help us grow, mature, and learn,
 To teach us from Your written Word,
 So truth from error we’ll discern. —Sper

Let God’s Word fill your memory, rule your heart, and guide your life.

Sickness


My special topic today Sickness:

There are many people who really say the wrong thing to people who are sick and have some cronic illness or the other !!!
here is some things for you to think about .....

1.Walk in my shoes for just one day. Feel the effects of chronic illness on your body. Listen to people say, "you look fine". Just try not to scream.

 2.There is a tough realization in knowing you are not nearly as strong as you have convinced people you are.

 3.My immune system attacks itself...What does your body do?

 4.Depression..something everyone experiences,but very few understand!

 5.**WARNING** I am sick, cranky, and tired.. so don't pee on my parade or I will be forced to take action.

 6.Runny nose, Stuffy head, Headache, Cough, Sore Throat. Comes with a grumpy attitude and a smart mouth. Available for pick up right away!!

 7. Sick with a stuffy head, sore throat, & sneezing. Therefore, you have been warned that I may bite. Just saying...

I COULD GO ON THE LIST WOULD BE TOO LONG ..So now you know what sick people think and feel so if you still don't understand revert to number 1.
 Don't be insensitive to sick people feelings worse yet there families !!

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