COVID-19 Tips for Patients with Myelodysplastic Syndromes and Acute Myeloid Leukemia – Curetoday.com

The COVID-19 pandemic has created a unique challenge for patients with myelodysplastic syndromes and acute myeloid leukemia, creating many questions that experts tried to answer in a recent webinar from The Aplastic Anemia and MDS International Foundation.

The Aplastic Anemia and MDS International Foundation (AAMDSIF) recently hosted a webinar to address the questions of this patient population by connecting them with Dr. Gail J. Roboz, professor of medicine and director of the clinical and translational leukemia program at the Weill Medical College of Cornell University in the New York Presbyterian Hospital in New York City.

Over the course of the webinar, Dr. Roboz, also a member of the AAMDSIF Medical Advisory Board, answered questions from the audience about the various ways that COVID-19 is impacting patients, from treatment delays to transplant and beyond.

Audience: If a patient with MDS were to be diagnosed with COVID-19, what are the most important things that they should let their medical team know, as they may not be familiar with MDS?Roboz: I think that it's important that if you're being seen in a facility where they don't know you very well or they don't know much about MDS, you can tell them that MDS is a is a bone marrow failure problem. You can tell them about your own blood counts, do I usually run low neutrophils or low hemoglobin or low platelets or all three, so you can tell them about what your specific experience is. But with respect to therapy, it is not completely clear that the underlying diagnosis, in this case MDS, is going to change what they do.

I think one of the questions is going to be about potential interactions with any medications that you're taking for MDS. And that's, of course, something that would be discussed if you're hospitalized.

If you are not getting hospitalized and you are patient with MDS, I certainly think it's reasonable to have, if at all possible, a daily or every other day telemedicine visit, either by video or by phone or by email, or however you're communicating with your doctor as a check in to just see how you're doing, see how your symptoms are evolving.

Should I continue with routine blood tests under the conditions or should I hunker down and not leave the house? If the previous blood test that the patient has had is looking absolutely perfect, and if there is a track record over a period of time that we know that this patient is tolerating the drug well and hasn't had any issues, I would be willing to consider skipping a routine blood test.

That said, I think it's really important to discuss this individually with the physician. First of all, depending on where you are, I'm hearing that in some parts of the country, you can actually drive to the doctor's office and they have a check in system that's allowing you to check in from your car, so that you could actually get into the office, get a lab check and get out without seeing really anybody.

Is there a change in patient protocol for when patient should be concerned about a fever?That is a really important question, especially for neutropenic patients. I think that if you are neutropenic and running a fever, neutropenic fevers do have to be evaluated, especially in hematologic malignancy patients.

If you don't feel too bad, and you're not having shaking chills and you think you can get your doctor's office on the phone quickly, it's not unreasonable to try that. That said, most of the time, it's really tough to get seen urgently in an office at this point. Again, it depends on where you are.

If you're going into the ER, you have to be very specific with them and say, hey, listen, I have leukemia, or I have MDS. This is my doctor. I'm neutropenic. I'm coming in with neutropenic fever, and they will evaluate you simultaneously for all of the routine things for neutropenic fever, as well as for coronavirus.

What are the recommendations regarding patients moving forward with transplant?I think that the issue is that the intensive care units in many areas, and the infectious disease doctors and many of the pulmonary specialists and other supportive specialties that are so critical to get patients safely through transplant, are very occupied at the moment.

But we want to make sure that when you come in for a procedure with curative intent, that all of the backup that we need to get you through the procedure safely is 100% available. So, it is definitely the case that patients are being delayed in their transplant. However, there are situations in which people might proceed. And I think again, this has to be a very individual discussion with the physician.

In the New York area, we are anticipating a surge in mid-April. So we definitely have been making decisions for our transplant patients that we don't want to bring you in here literally at the moment when they're predicting that things are going to get much worse, because maybe things will be better at the end of the month or at the beginning of the next month. And then we can hopefully start breathing a sigh of relief and bring you in much more safely.

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COVID-19 Tips for Patients with Myelodysplastic Syndromes and Acute Myeloid Leukemia - Curetoday.com

Medical ‘Wonder Women’ making a difference in the region’s fight on coronavirus – The Arab Weekly

TUNIS--From Merit-Ptah, the ancient Egyptian healer, to Rufaida Al-Aslamia, known as the first female surgeon in Islamic history, to Tunisian pioneering doctor Tewhida Ben Cheikh, the Middle East and North Africa region has been the birthplace of unique and exceptional women medical professionals.

Today, figures show an increasingly female-dominated sector in the Arab world: Women represent 65% of the medical doctors in the United Arab Emirates (UAE) and Bahrain, 61.5% of the graduate medical residents in Oman and more than 60% of the health sector workforce in Tunisia. Women constitute 79% of the nurses in Jordan.

Their numbers include talented and dedicated health workers who, today more than ever, face the biggest and riskiest challenge of their careers.

In the face of the pandemic, which has officially infected so far about 400 people in their country, Tunisian doctors, nurses and other medical professionals have been working day and night trying to limit the damage and make a difference while increasing risk to themselves.

We can talk about real gender parity here in the health sector. Women represent 50% of the total number of doctors in the country and they also represent a 60% majority of medical school students, Samira Merai, a lung specialist and former health and womens affairs minister, told The Arab Weekly.

Currently head of the pulmonary diseases department at the Rabta hospital, one of the most important public health establishments in the capital, Tunis, Dr Merai underlined the importance of the role played by women in the war against the coronavirus threat. None of the female doctors is claiming any particular advantage or protection because of their gender.

In all the hospitals of the country, I see resilient women who have pledged to work for days away from their families in order to help the country overcome the crisis, said Dr Merai.

To lead by example and reassure the employees, the former minister was the one who took blood samples from the first suspected cases received in the hospital. Dr Merai was also the one who suggested placing all COVID-19 patients in one centralised hospital in order to facilitate their treatment and contain the disease. Other female professionals are overseeing reconstruction work aimed at expanding the medical facilitys ability to accommodate more patients. Her actions and ideas encouraged other female health-care workers to give more. I see what they do and they make me believe in our health system, she says, proudly.

Dr Merai is among a number of female doctors playing key roles in the war on the coronavirus in Tunisia. On the public awareness-building front, Dr Nissaf Ben Alaya, an epidemiologist and head of the National Observatory of New and Emerging Diseases, has been offering daily briefings to the media since the beginning of the crisis. Another public health figure is Dr Agns Hamzaoui, director of the Abderrahmen Mami Hospital, the only health centre in the country exclusively dedicated to coronavirus patients.

Women medical professionals in the private sector are offering help to their colleagues in public hospitals. Some private clinics have even offered to treat patients for free and their staff have responded positively to the initiative.

Marwa H, a private clinic nurse (who preferred not to give her full name), told The Arab Weekly she is willing to stay at work and confine herself for up to a month away from her family just to be of help.

It is our role, no matter how small or large, to support our country in these circumstances. I am not the only one to have offered this aid, dozens like me have been helping every day for weeks, women left family and comfort to participate in the general efforts in this war, said the nurse. It is a war and we are its soldiers, despite the growing risk.

From the doctors to the cleaning janitors to the factory employees who self-isolated to manufacture face masks daily to the businesswomen who offered to shelter patients in their hotels and deliver food for the health-care workers of the hospitals, women are joining hands with men in fighting the pandemic. Beyond Tunisia, many medical professionals across the Arab world are setting an example and giving their all to help win the battle.

In Syria, Dr Iman Mohamed Abdel-Razzaq is one of the many heroes risking their lives on the frontlines. As an emergency physician, she has launched an individual initiative touring the northern Idlib camps to raise awareness of the dangers of the coronavirus and how to prevent it.

Meeting women and children, she takes a daily tour of the refugee camps to provide advice and guidance on the threat of the virus in light of the lack of health services and cleanliness in the space.

In Beni Suef, Egypt, eight female nurses working in the Department of Chest Diseaseshave volunteered to stay inside the local hospital permanently to work with the team of doctors treating coronavirus patients.On the other side of the Atlantic, Dr Nermeen Botros, an Egyptian-American doctor, has become an online sensation after an interview in The New York Post. Chief medical resident at Brookdale University Hospital Medical Centre in Brownsville, New York, the 35-year-old has been working six-day weeks, from early morning until late in the evening, dealing with the overwhelming inflow of cases.

Female healthcare professionals are not only treating patients but also suggesting solutions to put an end to the pandemic. Dr Heba Badreddine, a Sudanese doctor specialising in stem cell treatments and hematology, believes stem cell technology could help treat the coronavirus.

An associate professor at Khartoums Neelain University, she explained that stem cell treatment can be used to reduce complications caused by the virus to the lungs, possibly offering new ways to beat the disease.

Women medical professionals know that the war against the invisible enemy of coronavirus is not without risk to them. The pandemic has also infected quite a few members of the white army. Iraqis are still mourning the female doctor who died in the Norwegian capital, Oslo, after contracting coronavirus when treating patients. Dr Sara Hassan al-Musawi had passed away from complications of the virus at the age of 35.

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Medical 'Wonder Women' making a difference in the region's fight on coronavirus - The Arab Weekly

Ive had Seder in isolation, and this is my message of hope – The Jerusalem Post

This will not be my first Seder night in isolation. I hope my experience over a decade ago will offer some hope and encouragement for those approaching this coming Passover with understandable trepidation. More than 10 years have passed, but I can still smell the bleached sterility of Rambam Hospitals bone marrow transplant ward. I still see the tilted-headed sympathetic looks of the incredible nurses and doctors. But most of all, I recall the deep sense of horror I and my family were enduring.Diagnosed with a relapse of the blood cancer lymphoma, not yet 30, and with two small children at home, I arrived at the hospital a week before Passover to undergo a stem-cell transplant. It was a procedure that at best would see me hospitalized for a month, and in isolation for nothing less than two weeks. The treatment would include severe chemotherapy, and carried the risk of any infection likely being fatal. However, it offered the chance of remission from cancer. Such are the pros and cons of life and death decisions. Accompanied by my husband, I entered my hospital room and examined the confines of what was to be my only view for some time. My mind drifted longingly home, where we had left my parents, freshly flown in from London, and my two young boys whom I had kissed goodbye, maybe for three weeks, maybe for a month, maybe forever. But there was no turning back.I remember that Passover every year. And as I hug my children close, I recall that Seder night in isolation. I remember the uncertainty and the apprehension. This year, these fears resonate more than ever. I find my mind drawn back to the last time Passover was not as it should be, without family on Seder night. The last time the joy of the Feast of Freedom was soured by more than bitter herbs, but by concern and distress. This year, however, these fears are not solely mine. They are shared by thousands as, all over Israel and the Jewish world, families are facing the reality that grandparents will be alone on Seder night. We wont all get to hear grandchildren ask the Four Questions, join them singing Seder songs, or see them rummaging under the table for the afikoman. It is heart-breaking and distressing to even contemplate.But because these are demons I have faced, I want to share a message of hope. Even when not surrounded by family, even when faced with the enormity of my situation, Passover that year brought me strength. I was not able to be with my children but it served as a reminder to value every moment that we are together. It inspired me to push forward, to overcome, and to survive. Seder night has that power. Passover has that power. People and the Jewish People especially have the power to bring light where there is dark. We didnt just go through the motions of the Seder, or just rush through the Haggadah that year, instead we found new meaning in the texts and rituals. We found purpose. We found hope.To add to the inspiration of that lonely, special night, we were blessed with an unexpected guest. A fellow patient, who from a distance was able to join us for Seder in the isolation ward. With the nurses permission, she sat with us, and we spoke about how Moses led the Jews from slavery, and shared how the doctors were leading us from cancer. Both, to be clear, with the strong arm and outstretched hand of God.It occurred to me then, as it occurs to me now, that we were not separated because of hate an experience our people have known all too well but instead because of love. We are apart to keep us safe, to be sure that we may be able to be together again, soon.That said, there is no doubting that Passover, and especially Seder this year, will be very tough. But I hope it will serve as a source of inspiration for us all, and as we always say, Next year in Jerusalem.The author immigrated to Israel from the UK in 2006, and lives in Modiin with her husband and three sons.

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Ive had Seder in isolation, and this is my message of hope - The Jerusalem Post

Did a Cult Hair-Care Line Cause Thousands of Women to Lose Their Hair? – The New York Times

Dr. Wesley, who also reviewed the list of some 200 ingredients posted on the website, said that some of them, including aminomethyl propanol, a product stabilizer, do penetrate the skins uppermost layers. And depending on where a hair is in the growing cycle, it can be open or closed to product penetration, making it likely that some cleanser or cream has infiltrated the stem cell region of the follicle, Dr. Wesley said.

Maryanne Senna, a dermatologist and the director of the Hair Academic Innovative Research Unit at Massachusetts General Hospital in Boston, said that products dont need to reach the hair bulb the onion-shaped swelling you see if you pull a hair out by the root to cause hair loss. The superficial inflammation that products may cause can contribute to hair loss and increased breakage.

Inflammation around the follicle can also cause it to harden, affecting hair texture and, in the case of curly hair, curl pattern. What ingredient, specifically, may be causing the irritation? There are multiple possibilities, both doctors and a cosmetic chemist said after reviewing the ingredient list.

Dr. Senna and Perry Romanowski, a cosmetic chemist and founder of TheBeautyBrains.com, a site where scientists examine product ingredients and industry claims, separately suggested that fragrance could be to blame.

Its a huge sensitizer, said Dr. Senna, who also teaches at Harvard Medical School. Dr. Wesley pointed to a solvent called propylene glycol, which causes redness, and said that with such a lengthy list of ingredients, some instances of scalp sensitivity are not surprising.

Asked about these scientists assessments, DevaCurl responded with a statement from Ms. Smith reiterating that DevaCurls products do not penetrate the scalp or affect the hair bulb. Hair loss, she added, can result from many unrelated factors and there is zero evidence that our products are contributing to that process.

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Did a Cult Hair-Care Line Cause Thousands of Women to Lose Their Hair? - The New York Times

Coronavirus can cause loss of smell and scientists think they know why – ZME Science

One of the strangest things about COVID-19 has to do with anecdotal accounts of the loss of smell. Many people who suddenly couldnt sense otherwise pungent odors such as garlic later tested positive for COVID-19. Now, a new study draws a possible causal biological mechanism that might explain this odd symptom.

British ear, nose and throat doctors first sounded the alarm a week ago that loss of smell, technically called anosmia, may be linked with coronavirus infection.

According to the British doctors, at least two ear, nose, and throat specialists from Britain have been infected with the novel coronavirus after examining, unbeknownst to them, COVID-19 positive patients that came to check on their sudden loss of smell. Both doctors are now in critical condition.

In Wuhan, China, the epicenter of the pandemic, early reports warned that ear, nose, and throat specialists were getting infected and even died in large numbers under suspicious circumstances. These are not the doctors you go to see when you suspect you might have a coronavirus infection.

Previously described coronaviruses are thought to account for 10-15% cases. It is therefore perhaps no surprise that the novel COVID-19 virus would also cause anosmia in infected patients, theENT UK statementsaid.

There is already good evidence from South Korea, China and Italy that significant numbers of patients with proven COVID-19 infection have developed anosmia, the statement said.

In Germany, there have been reports of 2 in 3 confirmed cases having anosmia. In South Korea, where testing has been more widespread, 30% of patients testing positive have had anosmia as their major presenting symptom in otherwise mild cases. In some cases, loss of smell is present alongside loss of taste (ageusia).

Researchers from the Department of Neurobiology at Harvard Medical School were very intrigued by this odd symptom.

They investigated genetic datasets in order to identify which cell types in the olfactory tissue might express molecules that can allow the coronavirus to infect cells.

The researchers found that in both mice and humans, olfactory sensory neurons do not express two key genes (ACE2 and TMPRSS2) that allow SARS-CoV-2 (the coronavirus that causes COVID-19) to infect cells.

Instead, they found that support cells and stem cells found in the olfactory tissue express both of these genes. These are the same genes found in cells in the nasal respiratory tissue, which is the prime target and site of viral multiplication for the novel coronavirus.

Taken together, these findings suggest possible mechanisms through which CoV-2 infection could lead to anosmia or other forms of olfactory dysfunction, the Harvard researchers wrote in a study published in the pre-print server bioRxiv.

This study has its limitations, though. It hasnt been peer-reviewed nor have the findings been validated by experiments. Nevertheless, it is valuable to have a potential biological mechanism that might explain this odd but common symptom of COVID-19.

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Coronavirus can cause loss of smell and scientists think they know why - ZME Science

Former England footballer Geoff Thomas backs Mirror campaign to give NHS heroes a medal – Mirror Online

Former England footballer Geoff Thomas never doubted his sister Kay was a hero after she saved his life as he battled leukaemia.

Geoff was given just three months to live before a stem cell transplant from his big sister helped him make a miraculous recovery in 2004.

Now nurse Kay is ready to save even more lives by caring for coronavirus patients.

The 59 year-old has been a district nurse and cared for sick babies, but underwent special training to treat coronavirus patients alongside her NHS colleagues in Manchester last week.

Inspired by her example, Geoff is backing the Daily Mirrors campaign for all NHS staff to be honoured with a medal for their sacrifice during the coronavirus pandemic.

Geoff, 55, who captained Crystal Palace in the 1990 FA Cup final, said: I wouldnt be here without Kay. I think she was more nervous about the transplant than I was.

For me it was an opportunity, a second chance I didnt think I would have. For Kay it was a huge responsibility, because she was scared it wouldnt work and she didnt want to let me down.

We should be so grateful to all our doctors and nurses for taking on a similar responsibility now, caring for people with coronavirus. They deserve a medal when this is done.

Geoff was given the devastating news he had chronic myeloid leukaemia by telephone as he sat in a traffic in 2003. He underwent treatment to wash away the huge numbers of defective white bloods cells his body produced, which were slowly suffocating him, followed by chemotherapy.

But the only cure was a stem cell transplant. While Kay was not a perfect match for her brothers, doctors hoped Geoff would be able to endure the transplant due to his active career and lifestyle.

Geoff underwent his transplant in early 2004 and spent five weeks isolated in a room at the Queen Elizabeth Hospital in Birmingham as doctors had to destroy his immune system with full body radiation to stop it rejecting Kays cells.

He said: I was pushed to the brink. There was one night I wasnt sure I was going to get through it, but the next morning my cells levels started to rise.

Geoff then spent months recuperating at home with little human contact outside his family, to protect his fragile immune system as he recovered. At that stage a minor illness could have proved fatal, indeed a bout of shingles show him rushed back to hospital.

As a result, he has plenty of experience and some helpful tips when it comes to self-isolating.

Geoff, who lives with his wife Julie and mum Renee in Worcestershire, said: You have to remember why you are doing this. That was easy after my transplant, but the same applies now.

People donate to charities to save lives, but the fact is you can save lives right now by staying home. You could save someone you love or a complete stranger and you are helping the doctors and nurses on the frontline who are working so hard to keep us safe.

Another important thing is routine. When I was in hospital, my routine revolved swapping jokes with the nurses, trying to eat what they gave me, even though I didnt really feel like it, and looking forward to seeing Julie she was the only visitor I was allowed. It kept me going.

Set yourself little goals to help you stay positive, then look to build on that the next day. I always did that as a footballer and it helped me get through my recovery and self-isolation.

Stay in touch with your friends and family because social media has made that easier than ever, and try to appreciate the little things. Leukaemia teaches you to do that. Exercise is important too.

After recovering, Geoff was determined to help more people survive the deadly disease and began raising funds and awareness for Cure Leukaemia, a charity set up by Professor Charlie Craddock CBE, the doctor who oversaw his care in Birmingham.

He rode the Tour de France route with a team of volunteers ahead of the professional riders in 2005, earning him a BBC Sports Personality of the Year Helen Rollason Award.

Geoff will repeat that feat for the fifth and final time to raise 1 million for the charity this year. He will be accompanied by a team of 18 fundraising cyclists and is being supported by Match of the Day presenter Gary Lineker, whose son George survived leukaemia as a baby.

He said: We have come such a long way since that first ride. It's quite exciting in the world of blood cancer at the moment, because there are so many potential treatments identified.

The crucial things now is getting them to the bedside to help patients in hospital.

But in another way, nothing changes. We know we need to carry on raise money to fund the nurses who do such a fantastic job and the research fellows working to find a cure.

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Former England footballer Geoff Thomas backs Mirror campaign to give NHS heroes a medal - Mirror Online

Roma woman tells of her ‘life-changing’ MS treatment – Whitsunday Times

THERES a 70 per cent chance youre going to get a mum without MS for the first time.

Those were the words Amanda Weyman-Jones told her daughter before they hopped on a plane, in a last ditch-attempt for Amanda to take her future back.

In January, Amanda and daughter Chloe travelled halfway across the globe to Moscow, Russia for a life changing and experimental treatment in hopes it would effectively stop her three decade battle with multiple sclerosis in its tracks.

The trip was made possible with the support from the Roma community who banded together to help Amanda raise $80,000 to pay for the treatment only available in the Russian capital.

And according to Amanda, she has already seen a massive improvement with her condition.

Im walking and I would say I have improved 70 per cent already, and its only expected to get better as time goes on, the 58-year-old mother of six said.

They say that the treatment gives you an 80 per cent (chance) of curing your MS and at the moment, I feel like Im in that 80 per cent Im feeling really good about my chances.

Amanda underwent an experimental procedure called Autologous haematopoietic stem cell transplant (AHSCT) treatment, which rebuilds the patients immune system.

Seven weeks on and Amanda says she feels like a new person, and has been walking around the football field everyday, which she states is a miracle as she couldnt even walk to the field before the treatment.

Ever since returning to Roma from Russia in February, all she has wanted to do is shout from the rooftops that others living with MS can also have their lives changed.

I heard about a man on a property in Blackall with MS and hes young so I want him to know he doesnt have to have this disease, you can get better, Mrs Weyman-Jones said.

This treatment gives you that infinity with people. Its life saving stuff.

Amandas brother Hayward and sister Diana were both diagnosed with MS too; Hayward died last year, and Diana is now in a wheelchair.

All too familiar with the devastating effects of MS, Amanda is determined to not become a burden on her loved ones.

Amanda who has Primary Progressive MS was given an Expanded Disability Status Scale (EDSS) score of 4.5 which notes a limited walking mobility to approximately 300m without aide prior to treatment. With no action taken, she would probably have continued to progress until she was wheelchair bound. The EDSS is scored zero to 10, with 10 marking a person has died from MS.

Now, with more improvements expected to continue in the next six to 12 months, Amanda is hopeful her quality of life will improve and once her immunity has built up, to continue working at the family-owned-and-run Overlander Motel.

I will be forever grateful to Dr Frederinco, the brilliant medical team in Russia, Roma, its local businesses and the wider community for blessing me with a new life, Amanda said.

Through the generosity and support by all, I have realised how lucky I am to be surrounded by such a caring community.

Amanda said she knew that while there is a long road ahead of her, every passing day she is more feeling more hopeful.

I was told that recovery can be like a rollercoaster, so I will accept the bad days and make sure I remember the good, she said.

My walking is slowly getting safer and less hazardous to myself . and to all other pedestrians. Every morning I wake up, knowing that every days a better day.

I am a new person, it is just a miracle.

Stats about MS

With MS Queensland aware of nearly 4000 people living with Multiple Sclerosis in Queensland and over 25,600 people in Australia living with the neurological condition.

Most people with MS in Australia experience their first symptoms between 20 and 40 years of age, with about three quarters of people living with MS, female.

MS is not considered a classic genetic disease in that there is not one single gene that causes the condition. Rather, there are more than 200 different known genetic factors which contribute to the risk of developing MS. It has been estimated that genes may account for around half of the risk for MS, and those with a family history of MS are at greater risk than the general population. Even so, the majority of people with a family member with MS will not develop the disease so genes on their own are not enough.

MS is caused by a complex interaction between a persons genetics and environment factors.

Autologous haematopoietic stem cell transplant (AHSCT) is an immunosuppressive chemotherapy treatment combined with reinfusion of blood stem cells to help rebuild the immune system.

AHSCT has been used for decades for the treatment of blood cancers. However in the past ten or so years a number of international observational studies of several hundred patients have been published with some patients being followed for five to eight years.

The treatment consisted of four days of stimulation before the stem cells were collected and then Amanda was pumped full of high dose chemotherapy.

Amanda then had a rest day, and on January 29, her harvested stem cells were returned to her MS ravaged body, signalling the rebirth of her immune system with no memory of MS.

After that she was given daily steroid infusions and was put into isolation for six nights before one final dose of chemotherapy.

Response from MS Queensland about the treatment

CEO of MS Queensland Zane Ali said MS Queensland and MS Research Australia are continuing to support Australian research in the use of AHSCT to treat multiple sclerosis.

Rigorous evidence for the efficacy and safety of AHSCT in relation to other MS therapies, and the most appropriate circumstances for its use, is required for Australian hospitals and clinicians to provide this intervention with equity and with greater confidence in the potential outcomes, he said.

Australian hospitals and doctors are likely to recommend AHSCT as a possible treatment only if the other approved MS therapies are not working for an individual with MS or cannot be used in an individual for other reasons.

Despite Amandas MRI revealing her Central Nervous System was so progressed (with 35 lesions or more on the spine), she met the criteria for the treatment because of her mobility.

You have to be at a very healthy besides having MS, patients are tested from head to toe when they first arrive in hospital to ensure that they dont have any cancers or illnesses that could effect the viability of the treatment, said daughter Chloe.

The doctor was surprised after he saw how mobile mum still was considering the damage that he saw in her brain.

People arent accepted all of the time, some are told before they go and some are only told after all of the testing is completed in Moscow, then they are then sent home. International studies also suggest AHSCT does not halt or reverse progressive forms of the disease, and is therefore unlikely that

AHSCT would be recommended as a treatment for patients with secondary progressive or primary progressive MS.

Currently the treatment is provided in Australia through two observational clinical trials, at St Vincents, Sydney and Austin Health, Melbourne and by a small number of other centres on a case-by-case basis.

These centres have strict eligibility requirements that have been set by the hospital ethics committees and may only apply to limited numbers of patients with MS, Mr Ali said.

It is for this reason patients need to be referred to these centres by a neurologist, who can provide a detailed clinical history and MRI findings, Mr Ali said.

Mr Ali said that data from the large European Bone Marrow Transplant Registry suggests that in approximately 55 per cent of people with MS, treated with a range of different chemotherapy regimens, at three years of follow-up, inflammatory disease is halted with no evidence during the follow-up period of relapses, active brain lesions or disability progression.

After five years approximately 45 per cent of people remain progression free.

This case series included patients with both relapsing remitting and progressive disease, he said.

Other smaller studies have shown similar results, with remission of disease seen in these studies in at least 63 per cent of patients followed for a minimum of three years.

Most studies also show that the risk of disease activity returning gradually increases over longer periods of follow-up.

Mr Ali said in some but not all, of the people with MS who respond to AHSCT, some reversal of disability has been noted in some studies.

Other patients may continue to experience disease activity and disability progression (worsening) despite treatment with AHSCT, he said.

In people with progressive forms of MS or relapsing remitting MS of longer duration, the benefits of the procedure have been much less clear and accumulation of disability usually continues.

Amanda said they chose Moscow for the treatment because despite other countries offering the experimental procedure, after thorough research they found Russia had the highest rate of treatment success.

They accept advanced progressive MS where most of the other clinics offering it only treat relapsing remitting MS, she said.

I was still on my feet (only just) but people went over in wheelchairs, walkers, walking sticks and many were older than me.

For Chloe, who is training to become a nurse and who spent every spare moment researching AHSCT treatment said while they mostly compared the options available in Mexico and Russia, Russia stood out to them because it was cheaper and they had more experience.

One of the major influencing factors was that in Mexico patients stayed in a complex with they carer and in Russia patients stayed in a hospital, so we felt more reassured knowing that mum would have 24 hour care provided to her at the touch of a buzzer, she said.

Great lengths of a loving daughter

Although Amanda has lived with MS for 34 years, she feels like she is one of the lucky ones.

None of this would have been possible without Chloe. Her drive and determination surprises me every day, she said.

Researching, booking, fundraising and organising the whole trip, proves to me that I am the luckiest mum on earth.

Chloe was the driving force behind the push for treatment and the GoFundMe campaign which raised over half the $80,000 goal was with her mum every step of the journey.

I have found spending a month in Russia very interesting, the first couple of weeks for easy, but after that I just wanted to come home to Australia, the 19-year-old said.

Every day I would go and visit Mum in the morning and stay there with her until dark and then head on back to the hotel, I basically just did that every day.

I made some great friends with some other patients carers and so often we would catch up at the end of the day to recuperate and support each other.

Although the month spent away from her loved ones began to take its toll, Chloe has high hopes for the future.

It was very draining being over there, I felt like I wasnt doing much but I was just always so tired, she said.

Its amazing to see how quickly mum is healing after the treatment, but it will take some time to see what the true outcome for her is going to be.

In the end, we dont know what the future holds for mum and her MS, we are just thinking positively and hope that we see improvements over the next 12 months.

We feel very lucky that we had the opportunity to go over and are now advocating for other people to have the treatment as well.

Chloe and Amanda Weyman-Jones sightseeing in Moscow before the treatment began.

During the treatment.

Amanda Weyman-Jones with Greta and Theresa who were also going through the treatment.

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Roma woman tells of her 'life-changing' MS treatment - Whitsunday Times