Arthritis Awards Dubai

Khaleej Times Online >> News >> NATION Perils of Juvenile ArthritisAsma Ali Zain

7 January 2009 Print E-mail
DUBAI - When five-year-old Mustafa Atef started to moan of pain in his knees and legs, his mother, Abeer, dismissed his complaints, chiding him instead for wanting to skip school.

It was only when the complaining became frequent and Mustafa’s knee joints became swollen that his 40-year-old mother took notice.

“I did not take his complaints seriously, thinking he might have hurt himself while playing,” explains Abeer. But she and her husband, Atef Lasheen, became extremely worried, she recalls, when day-by-day Mustafa’s condition started worsening and his legs became swollen and stiff.

For six months, the Egyptian couple ran from pillar to post. “It was a nightmare. Doctors treated him for a heart condition but no one here seemed to know what was wrong with Mustafa while his condition seemed to worsen, especially during the morning time,” she explains. It was during a trip to Egypt three years ago that Mustafa was diagnosed with Juvenile Idiopathic Arthritis or Rheumatoid Arthritis, a relatively rare disease affecting 0.5-1 per cent of children worldwide.

“We did not believe this diagnosis one bit because I remembered my grandmother complaining of knee pains and my five-year-old could not possibly have it,” she says, sill in disbelief.

Over the six months time until he was diagnosed, Mustafa changed from a happy child to a dejected one. He was in constant pain; could no longer play with his friends as he used to earlier and, even worse, his legs couldn’t bear his weight anymore.

It was also a frustrating time for the couple and their elder daughter who have been living in Sharjah for the past 14 years. “Handling a boy of his age and trying to explain to him why he was different from others was really a trying time for us,” says the mother. He became increasingly grumpy, moody and withdrawn.

“My heart ached to see him turn from a lively boy to a grumpy, bedridden lad,” says Abeer. Wintertime was worse. Mustafa had to wear double layers of clothes but still could not lessen the pain and stiffness in his joints.

For nearly a year after his diagnosis, Mustafa, now eight and a Grade 3 student of Westminster School, could not attend school. “I missed my friends and most of all, I missed playing football. It is my favourite game,” says an extremely shy Mustafa. Asking his mother to translate his feelings, Mustafa says he felt enormous pain in his legs as well as other parts of his body.

On the school front, Abeer had to pass special instructions to his teachers while his friends helped gather class notes for him.

“While back in the UAE, we were at a loss. We went to several experts in Sharjah but no one was really qualified. We were then referred to Al Mafraq in Al Ain,” explains Abeer.

However, for a working couple, it was an exhausting journey every 10 days. “We were finally referred to the Dubai Bone and Joint Centre (DBAJ) in Jumeirah where Mustafa is currently being treated free of cost for the past two years. “We still have to pay up to Dh1,500 for two injections per week,” adds Abeer.

Says Dr Humeira Badshah, Rheumatologist at DBAJ, “It is a rare disease affecting up to one per cent of children in the world. The cause of the disease remains unknown but the immune system gets overactive and the white blood cells attack one’s own body.”

Referring to Mustafa’s case, Dr Badsha says it was likely he would outgrow the disease when he turned 18. “But in some cases the patients have to continue treatment lifelong,” she explains.

“When he came to us, he was limping and his knees were extremely swollen, but luckily, his parents had caught the disease in time,” she says.

“In another case at the centre, an 11-year-old has his hand frozen at 90 degrees angle only because there was a delay in the treatment,” she says.

In severe cases, children with this disease may never grow properly and may also need bone replacement surgeries.

On December 16, Mustafa, and four other people were given the “Heroes for Arthritis” Award by Princess Haya bint Hussein, wife of His Highness Shaikh Mohammed bin Rashid Al Maktoum, Vice-President and Prime Minster of the UAE and Ruler of Dubai, and Patron of the Emirates Arthritis Foundation (EAF) for their courage, selflessness and support in raising awareness on a number of arthritis-related diseases.

Mustafa now has to exercise regularly to keep his joints oiled. He also plays football and basketball and takes part in swimming.

asmaalizain@khaleejtimes.com

Princess Haya gives the Arthritis Heroes Awards in Dubai

 

 

Princess Haya and the Board of the Emirates Arthritis Foundation

 

Ankylosing Spondylitis Exercise club in Dubai

Dubai Bone and Joint center will launch a special exercise Prprgram for those suffering from Ankylosing Spondylitis (AS, a chronic, debilitating back conditon usually affecting young people. Please address enquiries to Rashid at info@dbaj.ae.

New hope for Osteoporosis

95% of the body’s serotonin is produced in the gut, yet this form of serotonin is barred by a membrane from entering the brain, where the chemical plays an important role in the central nervous system as a neurotransmitter. Serotonin’s role outside the brain has long been a mystery to scientists, but researchers recently discovered that serotonin may play a critical role in the formation of new bone. Researchers discovered the serotonin-bone density link from two genetic diseases, caused by a mutation of the gene LRP5. In one mutation, patients have such weak bones that they cannot walk on their own, while patients with the opposite mutation have such dense bones that it s difficult to extract teeth from their jawbones. After further investigation, researchers discovered that LRP5 acts on serotonin-producing cells in the gut, blocking an enzyme that converts the amino acid tryptophan to serotonin. Higher levels of gut-produced serotonin released in the blood stream inhibit bone formation, while lower levels allow greater formation of new bone. Researchers are now working to apply these findings to find a new treatment for osteoporosis. Patients with osteoporosis have accelerated bone loss, now a lack of bone formation, so they generally have normal serotonin levels. Experts believe the key to a new osteoporosis treatment lies in developing a drug that will suppress serotonin production in the gut, allowing more bone formation to occur.

New Gout Treatment in Dubai soon?

A US Food and Drug Administration Advisory panel voted 12-0 this week to recommend approval of the first new gout drug in 40 years: Takeda Pharmaceutical's febuxostat (Uloric®). One panel member abstained.

The Arthritis Advisory Panel had been concerned because early trials found a higher risk of death and heart problems associated with febuxostat, but a much larger clinical study commissioned by the company found that cardiac risk with febuxostat was not any higher than those with allopurinol.

According to Nancy Joseph-Ridge, head of research and development for Takeda, one advantage of the new drug is that it is safer and more effective than allopurinol for patients with kidney problems. “A lot of gout patients suffer from kidney disease,” said Dr. Joseph-Ridge. “This is something of real need. Patients who could not take the other drug will now have treatment.”

The vote followed presentations by Takeda Global Research & Development Center, Inc., the FDA, and invited guest speakers.

Febuxostat was approved earlier this year by the European Medicines Agency (EMEA) and is marketed there by Ipsen, an international specialty pharmaceutical group, as Adenuric®.

Arab Health rheumatology Conference Program 2009

What will the conference feature?

We aim to bring cutting edge information
about rheumatic diseases to the region
once more. Rheumatoid arthritis and other
connective tissue diseases are a leading
cause of disability around the world.
Through better management of these
conditions by Rheumatologists, Orthopedic
Doctors, Family Doctors and Internists the
burden of these diseases will be reduced
for patients and their families.

Chairperson
Dr. Humeira Badsha, Consultant
Rheumatologist, Dubai Bone and Joint
Center, Dubai Healthcare City, UAE


Invited Speakers

Prof. Paul Peter Tak, Professor of Medicine,
Director, Division of Clinical Immunology
and Rheumatology, EULAR & FOCIS Center
of Excellence, Academic Medical Center,
University of Amsterdam

Dr. Christopher Edwards, Consultant
Rheumatologist and Honorary Senior Lecturer,
Southampton University Hospitals, UK

Prof. Mohd Asim Khan, Professor of Medicine
at Case Western Reserve University (CWRU)
Cleveland, Ohio, Master American College of
Rheumatology

Dr. William Murell, US Sports Medicine
Specialist, Dubai Bone and Joint Center,
Dubai Healthcare City, UAE

Dr. Mohammed Al Shaker, Consultant
Orthopedics Surgeon, Medical Director
Osteoporosis Clinic, King Faisal Specilaist
Hospital and Research Center,
Kingdom of Saudi Arabia

Prof. Eugene McCloskey, Senior Clinical
Lecturer in Metabolic Bone Disease Division
of Clinical Sciences, University of Sheffield, UK

Dr. Gary S. Hoffman, Professor of Rheumatic
and Immunologic Diseases, Lerner College of
Medicine, Cleveland Clinic, USA

Dr. Claire Bombardier, Professor of Medicine,
Rheumatology Division, Director, University
of Toronto, Canadian Arthritis Network Co-
Scientific Director

Dr. Kaleb Michaud, Assistant Professor of
Medicine, Rheumatology and Immunology
Section, Department of Internal Medicine,
University of Nebraska

Dr. Rajesh Shah, Consultant Radiologist,
Dubai Bone and Joint Center, Dubai
Healthcare City, UAE

Dr. Imad Uthman, Professor, Department
of Internal Medicine, American University
of Beirut
Dr. David Kane, Consultant Rheumatologist,
Adelaide and Meath Hospital, Dublin, Ireland

17 March 2009In conjunction with the producers of Arab
Health, the Emirates Arthritis Foundation is
pleased to announce their 1st Conference:
Focus for Insurance Companies,
Third Party Payers and Healthcare
Policymakers
A message from the Patron of the Emirates
Arthritis Foundation: Her Royal Highness
Princess Haya Bint Al Hussein, wife of
UAE Vice President & Prime Minister
& Ruler of Dubai“When treated in the early stages, deformity
and disability of arthritis can be prevented.
The Emirates Arthritis Foundation continues
to support an increasing number of needy
patients who cannot afford treatments.”
The purpose of this conference is to highlight
the importance of early diagnosis and
aggressive treatment for patients suffering
from one of the hundred forms of arthritis.
Today, with the advent of biologic medication,
arthritis patients should not become disabled,
and thus can become contributing members
of society and fulfill their choice to work,
support families and most importantly have a
feeling of self-worth as they learn to live with
this chronic disease. With medications costing
up to AED80 000, together let’s find an
answer to help these patients.
13.00 Lunch and Networking
14.00 Welcome Address
14.15 Opening Remarks and Patient
Testimonials
15.00 Rheumatoid Arthritis: The Burden
of Disease and the Cost Effectiveness
of Treatments
15.20 Preventing Disability and
Improving Quality of Life in
Patients with Arthritis
16.00 Questions with Panel of Speakers
16.30 Closing Remarks


18 March 2009Session 1
09.00 Welcome and Opening
09.15 Rheumatoid Arthritis – Review of
Management in 2009 and Beyond
09.45 SLE – New Options Beyond
Cyclophosphamide and Steroids
10.15 Break and Networking
+971-4-3365161 +971-4-3364021 rheumat@iirme.com www.rheumatology09.com
10.45 Making a Difference – A Report
from the Emirates Arthritis Foundation
11.00 Ankylosing Spondylitis Early
Diagnosis and Management
11.30 Oral Abstract Presentation
12.00 Lunch
Session 2
13.30 Osteoporosis in the Middle East
14.00 Osteoporosis – Advances in
Pathogenesis and Risk Assessment
14.30 Review of Treatments
Available for Osteoporosis
15.00 Break
Session 3
15.15 Arthritis in the Islamic World
15.30 Vasculitis Update
16.00 Managing Inflammation –
The Great Debate: For and
Against Cox2 Inhibitors
17.00 Oral Abstract Presentations
17.30 Close
18.30 Wyeth Symposium and Social
Event

19 March 2009Session 1
08.00 Young Investigator Abstract
Presentations
08.30 Break
09.15 Rheumatoid Arthritis in the
Middle East: The Challenges
Session 2
09.45 Safety and Efficacy Update After
9 Years of Anti-TNF Experience
10.30 Quality of Life and Worker
Disability with Anti-TNF
Therapy
11.15 Experience with Anti-TNF
Drugs in the Region
11.30 Are the Genetics of
Inflammatory Arthritis in the
Middle East Entirely Different?
11.45 Break
Session 3
12.00 Temporal Arthritis: Ultrasound
to Diagnose
12.30 Ultrasound for Rheumatoid Arthritis:
An Overview
13.00 Workshop on Reading MRI in
Rheumatic Conditions
13.30 Lunch
14.30 Oral Abstract Presentations
Session 4
15.00 Vasculitis: From Bench to Bedside
– Why Patterns of Disease are
so Diverse
15.30 Scleroderma – Update on Management
16.00 Reactive Arthritis – The Regional
Experience
16.15 Periodic Fever Syndromes
16.30 Update on Behcet’s Disease
16.30 Announcement of Oral Abstract
Winners
17.00 Close
18.30 Schering Plough Symposium
and Dinner

20 March 2009Workshop 2
09.00 - 12.00
Research Seminar
* How to Set-up a Database -
An Introduction Lesson from the National
Data Bank for Rheumatic Diseases
* Clinical Trials – What you Need to Know
* Medical Biostatistics for the Clinician
and Introduction to SPSS
Workshop 3
09.00 - 12.00
Pediatric Rheumatology
Workshop 4
09.00 - 12.00
Musculoskeletal Ultrasound