An Actual Conversation With Maggie | Rett Syndrome

by ajtesler

We got the Eye Gaze Computer!!!  After a very hard fought battle with the district, they gave us the communication device Maggie needed.  They wanted to help the whole time, there were just a lot of hoops we had to go through.  But in the end, we got it.  I spent the better part of the last month programming it and then reprogramming it and then reprogramming it again.  I want to make sure it’s the perfect thing for her and they can never take it away.  (They could take it away if she doesn’t show an aptitude for it by the end of March)  It’s a PC, so it’s slow, and programming has been extremely tedious.  I’ve fallen asleep with it in my hands on more than a few occasions.

But now it’s in good enough shape where Maggie can really start to use it.  It’s been awesome.  She’s picked it up really quickly and we are able to actually communicate with her.  Look, it’s not perfect – we have to put in her vocabulary and words that we don’t know she knows, she doesn’t get to use.  The height and orientation have to be perfect for it to work and with her moving so much, just getting her to sit and attend to an activity is a tall order.  And, any extra second you take adjusting is another second she can decide “I’d rather do something else”.  But, while I don’t get to have a conversation, to the fullest extent of the law, I do get to hear what she’s thinking, more or less, some of the time, when she decides she wants to share.  At least now, it’s slightly more her decision than it was a month ago.

I’ll let the video speak for itself.  Accept, of course, all the words above I already am using.


Rett syndrome: How life changed after my daughter’s diagnosis

By Jennifer Facchinelli

Happy Ava during therapy

In the special needs community, there’s a term for the day your kid is diagnosed: D Day. Ours was Thursday, June 12th, 2014 at 11:42 a.m. I remember the exact time because I was impatiently checking the clock when the neurologist called us into his office.

Our daughter Ava was almost two years old and was being tested for Rett syndrome. The symptoms of Rett syndrome are often described as a mix of cerebral palsy, Parkinson’s disease, autism, anxiety disorder, severe apraxia, scoliosis and epilepsy. It’s a rare, non-inherited genetic disorder that almost exclusively affects girls, and it tends to rear its ugly head just after their first year of life (although in some cases it can appear as early as six months of age). The “hallmark” of Rett syndrome is near-constant repetitive hand movements, but the impairments that come with Rett are far more profound. The syndrome can affect a kid’s ability to speak, eat, walk and breathe.

I expected the test to come back positive, but hearing the doctor say the words still left me devastated. My beautiful angel (a pet name we’d given her at birth due to her sweet disposition) was now my “silent angel.” I was so profoundly sad, scared and dejected. And also very angry. A list of all the things Ava would never be able to do raced through my mind. In the months leading up to her diagnosis, Rett had been a distant “worst case scenario”—but now it was our reality.

In retrospect, while D Day was definitely our lowest point, it was also the day we started to claw our way back up. We threw ourselves into learning as much about Rett as possible, leaning on therapists, teachers, doctors and parents in the community. We zeroed in on the positive things they had to say about their experiences. Contrary to many outdated medical descriptions online and in print, we discovered that many girls regained—or learned new—motor skills with the help of intensive therapy. With the rise in recent years of eye gaze technology (computers with special cameras that allow the eyes to act as a computer mouse), those living with Rett not only proved they could communicate, but could even read despite never having been formally taught. And so, our family made a conscious decision never to set limits for Ava. “Can’t” and “won’t” became the worst four-letter words in our house. A good friend and fellow mom of a daughter with Rett syndrome once told me, “If you don’t believe in your kid, nobody else will.”

Today, about 18 months later, Ava is doing better than I ever imagined possible. She has an intense regime of unique physiotherapy called Cuevas Medek Exercises (CME), which helps improve gross motor skills and movements that allow kids with Rett to learn to stand, sit and walk. Ava can walk with assistance and we’re hoping one day she can do so independently. She also does occupational therapy on a weekly basis, and she’s starting to make small gains in her ability to control and use her hands purposefully.

Perhaps the most striking development is her ability to communicate. Not being able to talk doesn’t mean our little girl doesn’t have a lot to say. She’s learning to use her eye-gaze computer (Tobii) and is progressing quickly, often stringing together three to four words to create complete thoughts. Using various methods of Augmentative and Alternative Communication (AAC), she is showing us how incredibly smart she truly is—she knows all of the letters of the alphabet, is beginning to identify first letter sounds, and can spell her name. We’ve learned it’s OK to have high expectations and not set arbitrary limits on her overall potential. Most importantly, we’ve learned to listen to what Ava has to say, regardless of how she chooses to communicate it.


Ava uses her Tobii eye gaze computer.

We have so much hope for her future. Suffice it to say, Rett syndrome is not all rainbows and unicorns. It sucks. Really, really sucks. Her therapy appointments take a significant amount of time, money and effort. It’s tiring not only for Ava, but also for me. On days when she’s not feeling well or her apraxia (a motor planning disorder that affects speech and movement) is kicked into high gear, it’s tempting to admit defeat and surrender. But on those days, we lean on each other and rely on the support of family and friends. I know our efforts are not only benefitting Ava, but helping us just as much by allowing us not to feel so helpless.

I don’t know what the future holds for Ava. But I’m confident we’re headed in the right direction.

Jennifer Facchinelli is an elementary teacher (on leave) and mom to two beautiful girls.


Menopause reversal restores periods and produces fertile eggs

Women who have already passed through the menopause may be able to have children following a blood treatment usually used to heal wounds

Mother holding baby

MENOPAUSE need not be the end of fertility. A team claims to have found a way to rejuvenate post-menopausal ovaries, enabling them to release fertile eggs, New Scientist can reveal.

The team says its technique has restarted periods in menopausal women, including one who had not menstruated in five years. If the results hold up to wider scrutiny, the technique may boost declining fertility in older women, allow women with early menopause to get pregnant, and help stave off the detrimental health effects of menopause.

“It offers a window of hope that menopausal women will be able to get pregnant using their own genetic material,” says Konstantinos Sfakianoudis, a gynaecologist at the Greek fertility clinic Genesis Athens.

“It is potentially quite exciting,” says Roger Sturmey at Hull York Medical School in the UK. “But it also opens up ethical questions over what the upper age limit of mothers should be.”

Women are thought to be born with all their eggs. Between puberty and the menopause, this number steadily dwindles, with fertility thought to peak in the early 20s. Around the age of 50, which is when menopause normally occurs, the ovaries stop releasing eggs – but most women are already largely infertile by this point, as ovulation becomes more infrequent in the run-up. The menopause comes all-too-soon for many women, says Sfakianoudis.

The age of motherhood is creeping up, and more women are having children in their 40s than ever before. But as more women delay pregnancy, many find themselves struggling to get pregnant. Women who hope to conceive later in life are increasingly turning to IVF and egg freezing, but neither are a reliable back-up option.

The menopause also comes early – before the age of 40 – for around 1 per cent of women, either because of a medical condition or certain cancer treatments, for example.

“It offers hope that menopausal women will be able to get pregnant using their own genetic material“

To turn back the fertility clock for women who have experienced early menopause, Sfakianoudis and his colleagues have turned to a blood treatment that is used to help wounds heal faster.

Platelet-rich plasma (PRP) is made by centrifuging a sample of a person’s blood to isolate growth factors – molecules that trigger the growth of tissue and blood vessels. It is widely used to speed the repair of damaged bones and muscles, although its effectiveness is unclear. The treatment may work by stimulating tissue regeneration.

Sfakianoudis’s team has found that PRP also seems to rejuvenate older ovaries, and presented some of their results at the European Society of Human Reproduction and Embryology annual meeting in Helsinki, Finland, this month. When they injected PRP into the ovaries of menopausal women, they say it restarted their menstrual cycles, and enabled them to collect and fertilise the eggs that were released.

“I had a patient whose menopause had established five years ago, at the age of 40,” says Sfakianoudis. Six months after the team injected PRP into her ovaries, she experienced her first period since menopause.

Sfakianoudis’s team has since been able to collect three eggs from this woman. The researchers say they have successfully fertilised two using her husband’s sperm. These embryos are now on ice – the team is waiting until there are at least three before implanting some in her uterus.

Older mothers

The team isn’t sure how this technique works, but it may be that the PRP stimulates stem cells. Some research suggests a small number of stem cells continue making new eggs throughout a woman’s life, but we don’t know much about these yet. It’s possible that growth factors encourage such stem cells to regenerate tissue and produce ovulation hormones. “It’s biologically plausible,” says Sturmey.

Fertilised eggs

Sfakianoudis’s team says it has given PRP in this way to around 30 women between the ages of 46 and 49, all of whom want to have children. The researchers say they have managed to isolate and fertilise eggs from most of them.

“It seems to work in about two-thirds of cases,” says Sfakianoudis. “We see changes in biochemical patterns, a restoration of menses, and egg recruitment and fertilisation.” His team has yet to implant any embryos in post-menopausal women, but hopes to do so in the coming months.

PRP has already been helpful for pregnancy in another group of women, says Sfakianoudis. Around 10 per cent of women who seek fertility treatment at his clinic have a uterus that embryos find difficult to attach to – whether due to cysts, scarring from miscarriages or having a thin uterine lining. “They are the most difficult to treat,” says Sfakianoudis.

But after injecting PRP into the uteruses of six women who had had multiple miscarriages and failed IVF attempts, three became pregnant through IVF. “They are now in their second trimester,” says Sfakianoudis.

Fertility aside, the technique could also be desirable for women who aren’t trying to conceive. The hormonal changes that trigger menopause can also make the heart, skin and bones more vulnerable to ageing and disease, while hot flushes can be very unpleasant. Many women are reluctant to take hormone replacement therapy to reduce these because of its link with breast cancer. Rejuvenating the ovaries with PRP could provide an alternative way to boost the supply of youthful hormones, delaying menopause symptoms.

Ovarian follicle
More eggs, please

Steve Gschmeissner/SPL

However, Sfakianoudis’s team hasn’t yet published any of its findings. “We need larger studies before we can know for sure how effective the treatment is,” says Sfakianoudis.

“One woman had been in menopause for 5 years. Six months after treatment, she had a period“

Some have raised concerns about the safety and efficacy of the procedure, saying the team should have tested the approach in animals first. “This experiment would not have been allowed to take place in the UK,” says Sturmey. “The researchers need to do some more work to make sure that the resulting eggs are OK,” says Adam Balen at the British Fertility Society.

To know if the technique really does improve fertility, the team will also need to carry out randomised trials, in which a control group isn’t given PRP.

Virginia Bolton, an embryologist at Guy’s and St Thomas’ Hospital in London, is also sceptical. “It is dangerous to get excited about something before you have sufficient evidence it works,” she says. New techniques often find their way into the fertility clinic without strong evidence, thanks to huge demand from people who are often willing to spend their life savings to have a child, she says.

If the technique does hold up under further investigation, it could raise ethical questions over the upper age limits of pregnancy – and whether there should be any. “I lay awake last night turning this over in my mind,” says Sturmey. “Where would the line be drawn?”

Health issues like gestational diabetes, pre-eclampsia and miscarriage are all more common in older women. “It would require a big debate,” says Sturmey.


Sperm home test kit

How are the little swimmers doing? Low sperm counts or poor sperm quality are behind around a third of cases of couples who can’t conceive. A visit to a clinic for a test can be awkward, but a smartphone-based system lets men determine whether that’s necessary by checking their fertility at home.

Men often find it embarrassing to give a semen sample at a clinic, says Yoshitomo Kobori at the Dokkyo Medical University Koshigaya Hospital in Japan. So Kobori devised an alternative. “I thought a smartphone microscope could be an easy way to look at problems with male fertility,” he says.

Kobori and his colleagues came up with a lens less than a millimetre thick that can be slotted into a plastic “jacket”. Clipped on to the camera of a smartphone, it magnifies an image by 555 times – perfect for looking at sperm.

To do a home test, a man would apply a small amount of semen to a plastic sheet around five minutes after ejaculation and press it against the microscope.

Watch them swim

The phone’s camera can then take a 3-second video clip of the sperm. When viewed enlarged on a computer screen, it is easy for someone to count the total number of sperm and the number that are moving – key indicators of fertility.

Kobori says the system works as well as the software used in fertility clinics. When the team ran 50 samples through both systems, they got almost identical results. The work was presented at the European Society of Human Reproduction and Embryology meeting in Helsinki this month.

The system can’t assess the ability of sperm to fertilise an egg. “This method is only the simple version of semen analysis,” says Kobori. But that could be enough for men to identify potential fertility problems, and decide whether to seek help from a doctor.


Science finds Soil can Help Depression and Anxiety

By Tanja Taljaard


How you can Benefit from Antidepressant Microbes in soil

A couple of years ago, a friend of mine was recovering from a serious illness. While reflecting on that time in her life, she mentioned how her garden, and gardening, played a big part in her own healing. Walking with her in her vibrant garden, I could see and feel how being surrounded by these beautiful plants and using homegrown, organic vegetables and herbs as medicine would be healing on many levels.

Most ardent gardeners will concur that the act of gardening can reduce stress and improve your mood. When you think about it, there are obvious benefits from tending a garden. You’re outside in the fresh air and Vitamin D producing sunshine (which helps regulate your serotonin levels), rather than being cooped up inside. But now science is proving through experiments that there are actual microorganism in the soil that affect our sense of wellbeing.

There are actual microorganism in the soil that affect our sense of wellbeing

Playing in the Dirt

There are actual antidepressant microbes in soil. Mycobacterium vaccae is found in soil, and activates the release of brain serotonin. Serotonin and dopamine are two chemicals that boost our immune system and keep us happy. Both Dopamine and Serotonin are neurotransmitters, chemical messengers in the brain. Dopamine affects your emotions, movements and your sensations of pleasure and pain. In the brain, Serotonin regulates mood, social behaviour, libido, sleep, memory, and learning. Interestingly, 95% of our serotonin is manufactured in the intestines, not the brain; therefore someexperts consider serotonin a hormone as well as a neurotransmitter. When you are gardening, M. vaccae is on your skin when you have your bare hands in the soil, you inhale it when you breathe, or it gets into your bloodstream through a little cut perhaps.

Soil on hands
Serotonin and dopamine are two chemicals that boost our immune system and keep us happy.

The effects of the soil bacteria were discovered accidently by oncologist Dr Mary O’Brien. She created a serum out of the M. vaccae bacteria and gave it to lung cancer patients to boost their immune system. She noticed that another effect of the serum was that the patients felt happier, more vital, and they suffered from less pain. Building on this, researchers Dorothy Matthews and Susan Jenks administered M. vaccae to mice and performed behavioural tests. Jenks says, “What our research suggests is that eating, touching and breathing a soil organism may be tied to the development of our immune system and nervous system.” They found that not only were the mice less anxious, they showed improved cognitive function by navigating a maze twice as fast as the ones that did not eat the bacterium. Matthews states “It is interesting to speculate that creating learning environments in schools that include time in the outdoors where M. vaccae is present may decrease anxiety and improve the ability to learn new tasks.”

Healthy Soil, Healthy Body

Mycobacterium vaccae is one of a vast spectrum of microbes that have been interacting and co-evolving with us. The well-being of our immune system and psychology is enhanced by frequent exposure, in our early childhood, to a diverse group of bacteria, fungi, protozoa, and worms. Our gastro-intestinal tract develops a hundred trillion microbes over time, determined in part by genetics and in part by what bacteria live in and on those around us. Prof Graham Rook refers to these creatures, which interact with us through our skin, lungs, and gut, as “Old Friends”. He says that deficiencies in microbial exposure could be the key to the recent increase in chronic health problems, including autoimmune diseases and depression. There is undeniable evidence that we need a diverse range of these organisms (found in animals, plants, soil, water and air) for the optimal functioning of our immune and nervous systems. Read more about the brain-gut connection here.

The well-being of our immune system and psychology is enhanced by frequent exposure, in our early childhood, to a diverse group of bacteria, fungi, protozoa, and worms

Green is good for you

Simply seeing or looking at plants, trees and nature impacts your mental, social and physical well-being. Researchers have found that even viewing representations of nature can help the body to heal. Roger S. Ulrich, PhD investigated the effect that views from windows had on patients recovering from surgery. He discovered that patients whose hospital rooms overlooked trees recovered better than those whose rooms overlooked brick walls. Patients who could see nature got out of the hospital faster, had fewer complications and required less pain medication than those forced to stare at a wall.

Happy gardener
Looking at plants, trees and nature impacts your mental, social and physical well-being

Gardening is a physical activity, sometimes quite a vigorous workout, as many gardeners would tell you. Gardens can create community. There’s also something magical about being part of the creative process, tending and nurturing seeds and seedlings into fully-grown plants. Permaculturist Robyn Francis talks about the Harvest High – the release of dopamine in the brain when we harvest products from the garden. “Researchers hypothesise that this response evolved over nearly 200,000 years of hunter gathering, that when food was found (gathered or hunted) a flush of dopamine released in the reward centre of the brain triggered a state of bliss or mild euphoria. The dopamine release can be triggered by sight (seeing a fruit or berry) and smell as well as by the action of actually plucking the fruit.”


HIV Functional Cure: STEM Cell Treatment Breakthrough After Berlin & Barcelona Patients Cured

Barcelona – Research using man-made, blood-forming stem cells has shown great promise in animal experiments in suppressing HIV.

But now a grant from the California Institute for Regenerative Medicine (CIRM) has funded a clinical trial using those bio-engineered stem cells to treat HIV patients who have lymphoma, a deadly cancer that eventually kills people with AIDS.

Timothy Brown was the first patient to ever be cured of HIV after a bone marrow transplant to treat his leukemia received. He is known as the ‘Berlin patient’.

By using blood transplants from the umbilical cords of individuals with a genetic resistance to HIV, Spanish medical professionals believe they can treat the virus, having proven the procedure successful with one patient.

Now, a 37-year-old man from Barcelona, who had been infected with the HIV virus in 2009, was cured of the condition after receiving a transplant of blood.

While unfortunately the man later died from cancer just three years later, having developed lymphoma, the Spanish medical team is still hugely encouraged by what it considers to be a breakthrough in the fight against HIV and related conditions, according to the Spanish news source El Mundo.

Doctors in Barcelona initially attempted the technique using the precedent of Timothy Brown, an HIV patient who developed leukemia before receiving experimental treatment in Berlin, the Spanish news site The Local reported.

Brown was given bone marrow from a donor who carried the resistance mutation from HIV. After the cancer treatment, the HIV virus had also disappeared.

According to The Local, the CCR5 Delta 35 mutation affects a protein in white blood cells and provides an estimated one percent of the human population with high resistance to infection from HIV.

Spanish doctors attempted to treat the lymphoma of the so-called “Barcelona patient” with chemotherapy and an auto-transplant of the cells, but were unable to find him a suitable bone marrow.

“We suggested a transplant of blood from an umbilical cord but from someone who had the mutation because we knew from ‘the Berlin patient’ that as well as [ending] the cancer, we could also eradicate HIV,” Rafael Duarte, the director of the Haematopoietic Transplant Programme at the Catalan Oncology Institute in Barcelona, told The Local.

Prior to the transplant, a patient’s blood cells are destroyed with chemotherapy before they are replaced with new cells, incorporating the mutation which means the HIV virus can no longer attach itself to them. For the Barcelona patient, stem cells from another donor were used in order to accelerate the regeneration process.

Eleven days after the transplant, the patient in Barcelona experienced recovery. Three months later, it was found that he was clear of the HIV virus.

Despite the unfortunate death of the patient from cancer, the procedure has led to the development of an ambitious project that is backed by Spain’s National Transplant Organization.

March 2015 marked the world’s first clinical trials of umbilical cord transplants for HIV patients with blood cancers.

Javier Martinez, a virologist from the research foundation Irsicaixa, stressed that the process is primarily designed to assist HIV patients suffering from cancer, but “this therapy does allow us to speculate about a cure for HIV,” he added.

Despite the joy and ululation, those who think its time to celebrate may have not done their research. The process of curing HIV referred to by the doctors is called Stem Cell Transplant. Whilst it has worked on this one patient, there is a lot more information about its viability and use as a cure for all people affected with HIV / AIDS.
To begin with, getting a Stem Cell Transplant is much more dangerous than living with HIV.
To successfully complete an SCT you have to completely destroy the stem cells in your bone marrow using intense conditioning resulting in:
1. Low/No white blood cells – [no ability to fight off infection, meaning even something as small as flu could kill you]
2. Low Platelets – [heavy risk of uncontrollable bleeding- a nosebleed would most likely result in death)
3. Low hemoglobin – [you will need many, many blood transfusions]
4. Graft vs Host disease – [which can cause really poor quality of life or kill you]
5. A long time spent in hospital – [weeks to months, if not a year plus].
Stem Cell Transplants do save lives, but judging by the risks state above, they only make sense for people who have specific life threatening conditions such as acute leukemia. These conditions would imply that loss of life is almost guaranteed, and certain, leaving SCT as the last hope or only option.
From a sensible perspective, HIV is now a manageable chronic condition in most cases. This “CURE” is certainly interesting but probably not applicable for almost all HIV positive people.
HIV is a minor inconvenience in the world of modern medicine. It is easily controlled with 1 pill (ARVs) taken once a day, typically with no complications or side effects.
However, dying from a bone marrow transplant because of the risks mentioned before is, by comparison, a major inconvenience.
There is great reason to be excited however, discoveries like these are a major breakthrough and can allow medical personnel to build on them for a more constructive and less intensive cure.

Trials are already underway to gather more information. They started in March 2015.

To decide if it could be done or not a trial, it was necessary first to note that Spanish banks umbilical cord had samples that will carry a key mutation that is responsible for transferring protection against HIV. This is the genetic mutation CCR5 Delta 3 , a variation that acts as a shield against the AIDS virus. Cells carrying this variant areimpermeable to the pathogen.

That’s what was discovered, almost by chance, with the Berlin patient, ie, if a person receives bone (or cord blood) from another subject that carries this positive change, will renew your blood cells they are immune to HIV, the body that will end disappearing.

“We knew that Spain is a world power in number of cords and cellularity, because the collection protocol makes us samples with many cells needed for transplants in adults. So we decided to analyze those cells rich laces, 25,000 . To this end, we agreed with all the autonomous communities and cord banks, “he told WORLD Rafael Matesanz, director of the National Transplant Organization, which has funded the search with about 100,000 euros.

After one year evaluating cord by cord to see which of them carried the mutation , said Rafael Duarte, who was director of Hematopoietic Transplant Program at the Catalan Institute of Oncology (ICO) and is now head of Hematopoietic Transplantation Oncohematology and the Hospital Puerta Iron, “we have managed to identify this feature 157 units, representing 0.6% of the Spanish population.”

That elite cords, and a solution for those offers that require a transplant for hematologic problem, an option to cure HIV to those who, besides being HIV positive, develop a cancer of the blood. “This is not a therapy for any patient with HIV. Only is intended for those who in addition to the virus develop leukemia, lymphoma, etc,” explains Matesanz.

With antiretroviral treatments available, a general therapy umbilical cord blood is not viable. First, because there are few units worldwide who carry the mutation makes the infallible cells against the virus, and secondly because this type of transplantation is not without risks. According to overall figures in Europe the expected mortality from complications of transplant is between 20% and 25%.

This is only acceptable in patients with very serious blood disease , which if not treat them in a short time, to death. Furthermore, according a study of over 100 patients, those with HIV who have undergone a bone marrow transplant have a higher risk of complications than for people without HIV. Therefore, there is a therapy for all HIV-positive people but to very specific cases, “says Duarte.

For all this is important to test this treatment in the context of a clinical trial, said the hematologist, because the protocols are the same in the various hospitals where it is made, monitoring will be equal and once the results are available, allow you to learn from experience experts worldwide.

The trial, which will involve the Puerta de Hierro Hospital, the Gregorio Maranon (both in Madrid), the Catalan Institute of Oncology (ICO), and the Hospital La Fe de Valencia, along with cord blood banks and the ONT, It aims to recruit patients in two to five years. “The first patient is already in. It is discussed in Madrid not until later this year or early next, because previously required to go through a chemotherapy [to kill tumor cells in their bone] and a conditioner that take several weeks. This is a person with a type of lymphoma and HIV we do not want to give more information, “said Duarte, who is the principal investigator of this trial.

157 cords mutation CCR5 Delta 3 identified in Spain continue to be part of the international registration, REDMO, but is an advisory committee (formed by doctors in hospitals, banks cord and ONT) through a protocol established to decide what to do with them if they are claimed by researchers from another country well for an HIV-positive patient with a hematologic or problem for a person without carrying HIV, consistent with the cord and requires a medical problem as a leukemia or lymphoma.

The trial, scheduled for three years and with a budget of 150,000 euros provided by the Mutua Madrileña Foundation, is within an experimental framework. “It is looking for a high amount of healing but the proof of the hypothesis that this transplant can make HIV disappear. The implications are qualitative rather than quantitative.”

The same view Josep Maria Gatell, co-director of the XV European AIDS Conference being held these days in Barcelona, is shown “is interesting in terms of research, no practical way for the current treatment of patients with HIV.”


Exercise May Ease Hot Flashes, Provided It’s Vigorous


Hot flashes are a lamentable part of reaching middle age for many women. While drug treatments may provide relief, two new studies suggest that the right type of exercise might lessen both the frequency and discomfiting severity of hot flashes by changing how the body regulates its internal temperature.

As estrogen levels drop with the onset of menopause, many women become less adept, physiologically, at dealing with changes to internal and external temperatures. The result, famously, is the hot flash (also known as a hot flush), during which women can feel sudden, overwhelming heat and experience copious sweating, a problem that in some cases can linger for years.

Hormone replacement therapy can effectively combat hot flashes, and antidepressants may also help, though drug treatments have well-established side effects. Weight loss also may lessen hot flashes, but losing weight after menopause is difficult.

So researchers at Liverpool John Moores University in England and other institutions recently began to consider whether exercise might help.

Endurance exercise, after all, improves the body’s ability to regulate temperature, the scientists knew. Athletes, especially those in strenuous sports like distance running and cycling, start to sweat at a lower body temperature than out-of-shape people. Athletes’ blood vessels also carry more blood to the skin surface to release unwanted heat, even when they aren’t exercising.

If exercise had a similar effect on older, out-of-shape women’s internal thermostats, the scientists speculated, it might also lessen the number or the intensity of their hot flashes.

Previous studies examining exercise as a treatment for hot flashes had shown mixed results, the scientists knew. However, many of those experiments had been short term and involved walking or similarly light exercise, which might be too gentle to cause the physiological changes needed to reduce hot flashes.

So for the two new studies, one of which was published in the Journal of Physiology and the other in Menopause (using the same data to examine different aspects of exercise and hot flashes), the researchers decided to look at the effects of slightly more strenuous workouts.

They first recruited 21 menopausal women who did not currently exercise but did experience hot flashes. According to diaries each woman kept for a week at the start of the study, some women were having 100 or more of them each week.

The scientists also measured each woman’s general health, fitness, blood flow to the brain (which affects heat responses) and, most elaborately, ability to respond to heat stress. For that test, researchers fitted the women with suits that almost completely covered their bodies. The suits contained tubes that could be filled with water. By raising the temperature of the water, the scientists could induce hot flashes — which typically occur if an affected woman’s skin grows hot — and also track her body’s general ability to deal with heat stress.

Fourteen of the women then began an exercise program, while seven, who served as controls, did not. (This was a small pilot study, and the researchers allowed the women to choose whether to exercise or not.)

The sessions, all of them supervised by trainers, at first consisted of 30 minutes of moderate jogging or bicycling three times a week. Gradually, the workouts became longer and more intense, until by the end of four months the women were jogging or pedaling four or five times per week for 45 minutes at a pace that definitely caused them to pant and sweat.

They also, in the last of those 16 weeks, kept another diary of their hot flashes.

Then they returned to the lab to repeat the original tests.

The results showed that the exercisers, unsurprisingly, were considerably more aerobically fit now, while the control group’s fitness was unchanged.

More striking, the women who had exercised showed much better ability to regulate their body heat. When they wore the suit filled with warm water, they began to sweat a little earlier and more heavily than they had before, showing that their bodies could generally dissipate heat better.

But at the same time, during an actual hot flash induced by the hot suit, the exercisers perspired less and showed a lower rise in skin temperature than the control group. Their hot flashes were less intense than those of the women who had not worked out.

Probably best of all from the standpoint of the volunteers who had exercised, they turned out to have experienced far fewer hot flashes near the end of the experiment, according to their diaries, with the average frequency declining by more than 60 percent.

These findings strongly suggest that “improvements in fitness with a regular exercise program will have potential benefits on hot flushes,” said Helen Jones, a professor of exercise science at Liverpool John Moores University, who oversaw the new studies.

Precisely how exercise might change a women’s susceptibility to hot flashes is still not completely clear, although the researchers noted that the women who exercised developed better blood flow to the surface of their skin and to their brains during heat stress. That heightened blood flow most likely aided the operations of portions of the brain that regulate body temperature, Dr. Jones said.

The cautionary subtext of this study, though, is that to be effective against hot flashes, exercise probably needs to be sustained and somewhat strenuous, she said. “A leisurely walk for 30 minutes once a week is not going to have the required impact.”


It’s 3 Times More Common Than Anorexia So Why Haven’t You Heard Of It? Life Insurance Program

Trichotillomania is a compulsive hair pulling disorder that affects 15 million people. (Anthony Delanoix/ Barn Images)


I entered the hotel conference room, experiencing the familiar feeling of awe, laced with a twinge of fear. I passed strangers, smiling broadly at men and women with unusual features: missing eyebrows, bald spots on their scalps, stubbly eyelashes. After months of isolation, I was surrounded by people like me. People who pulled out their own hair.

A conference of hair pullers? Isn’t this crazy? As a matter of fact, it’s not. Fifteen million Americans pull their hair, part of a little-known psychiatric condition called trichotillomania (trick-o-TIL-o-mania). Though hair pulling is three times more common than anorexia, it remains one of the most enigmatic disorders of mental health. Few are familiar with the disorder, and even fewer understand how to treat it.

Today I pull exclusively from my scalp, and am completely bald — I wear wigs and headscarves.

I’ve been a hair puller since I was 8 years old. I began one day when I was absentmindedly thumbing my eyebrows and found one follicle that felt out of place. I tugged. Then again, and again. An hour later, half of one eyebrow was missing. My parents and pediatrician were puzzled. No one noticed my seclusion, retreats to my closet, the swollen and blistered fingers of my hand. My doctors and parents couldn’t see something they didn’t know to look for. Finally, my mother Googled “hair loss causes” and discovered a new possibility.

Though my parents now knew the name for my disorder, they were in the dark about how to get me help. Even psychologists who were familiar with trichotillomania were unable to understand the truth: My hair pulling was uncontrollable, not a bad habit. I was not plucking my hair to get attention or to injure myself. I was plucking because it felt good and necessary — often the behavior put me in a trance. I was unaware I was doing it.

Trichotillomania disrupts the day-to-day lives of sufferers, creating feelings of intense shame and isolation. The majority of hair pullers also have some form of depression and/or anxiety disorder, and many have accompanying obsessive-compulsive disorders. Some, as I have in the past, self-mutilate; others consider suicide.

Boston has been one of the first cities to get on board with trichotillomania research. Massachusetts General Hospital features a separate trichotillomania clinic and research unit. Experts at MGH are connected to the Trichotillomania Learning Center (TLC), the only nonprofit organization in the country dedicated to supporting hair pullers. TLC hosts conferences and events throughout the country, hoping to establish a community of support for a largely alienated population. Conferences, such as the one I attended in August at the Cambridge Marriott, act as summits of leading researchers and clinicians. And they provide hope.

But the numbers remain bleak for treatment:

There are zero FDA-approved drugs for trichotillomania.

Over a century after the first diagnosed case of trichotillomania, there have been a grand total of nine medical studies for hair pulling.

Hair pulling has been neglected by psychiatry for two major reasons. First, there is a faulty perception that it has low prevalence. Because we haven’t heard of trichotillomania, and its sufferers are largely in hiding, we assume that it is rare so we cannot justify expending resources. In fact, two in 50 people are thought to have body-focused repetitive behaviors, or BFRBs, such as hair pulling, skin picking and nail biting.

Few are familiar with the disorder, and even fewer understand how to treat it.

Secondly, we often define the severity of disorders depending on how life-threatening they are, rather than how debilitating they are in day-to-day life. Sufferers of trichotillomania — your friends, family members and neighbors — struggle in silence, often believing they are the only ones in the world who do what they do. At a 10 to 20 percent remission rate, a hair pulling diagnosis likely means a lifetime condition.

I am now 24 years old and have been living with trichotillomania for almost two decades. Today I pull exclusively from my scalp, and am completely bald — I wear wigs and headscarves.

My attempts to stop plucking have been nearly constant, but, time and time again, I haven’t known where to turn for help. The research just isn’t there.

It’s time for the public to become aware of disorders like trichotillomania. I have watched too many hair pullers fight a battle that is currently unwinnable, simply because there is so little funding for treatments and a potential cure. I hope that, someday, I won’t have to wait for a conference of hair pullers to feel understood.

The author pictured at the 2015 Trichotillomania Learning Center conference in Arlington, Virginia (Courtesy of Jillian Clark)


Scientist Says ADHD is Basically Bullsh*t



Attention Deficit Hyperactivity Disorder, or ADHD, “is a prime example of fictitious disease,” said Leon Eisenberg, the “scientific father of ADHD,” shortly before he passed away at the age of 87 in 2009.

Why would Eisenberg claim that a condition we’ve come to know so well is largely fictitious?  While many have said that Eisenberg’s statement is highly exaggerated, it turns out that numerous doctors are finding conclusive evidence that ADHD is being “over-diagnosed” due to inaccurate diagnostic methods.

Jerome Kagan, a leading expert in child development, says:

Let’s go back 50 years. We have a 7-year-old child who is bored in school and disrupts classes. Back then, he was called lazy. Today, he is said to suffer from ADHD (Attention Deficit Hyperactivity Disorder). . . . Every child who’s not doing well in school is sent to see a pediatrician, and the pediatrician says: “It’s ADHD; here’s Ritalin.” In fact, 90 percent of these 5.4 million kids don’t have an abnormal dopamine metabolism. The problem is, if a drug is available to doctors, they’ll make the corresponding diagnosis.”

Today in the U.S., one out of every ten boys aged 10 years old takes some form of medication for ADHD every day.  And as this number continues to rise, those with stakes in the pharmaceutical industry continue to make money.

Lisa Cosgrove, an American psychologist, highlights in her study “Financial Ties between DSM-IV Panel Members and the Pharmaceutical Industry” that 100 percent of members on the panels of ‘Mood Disorders’ and ‘Schizophrenia and Other Psychotic Disorders’ have ties to pharmaceutical companies.

The assistant director of the Pediatric Psychopharmacology Unit at Massachusetts General Hospital and associate professor of Psychiatry at Harvard Medical School, who had over $1 million in earnings from drug companies from 2000 to 2007, is just one example.

And, when we look at the amount of money the United States pharmaceutical industry spent in 2004 on sales promotion (24 percent of sales) versus how much they spent on researching and developing their drugs (13.4 percent), it becomes obvious that selling their drugs is far more important than the drug itself.

So, are these drugs even safe?  Side effects listed on antidepressant black-box warnings are as follows:

  • Confusion
  • Depersonalization
  • Hostility
  • Hallucinations
  • Manic reactions
  • Suicidal ideation
  • Loss of consciousness
  • Delusions
  • Feeling drunk
  • Alcohol abuse
  • Homicidal ideation

Would you ever give your children these drugs?


New Research Says Smoking Marijuana Causes Complete Crohn’s Disease Remission In 45% of Patients – Life Insurance Program

In the United States, according to the Controlled Substance Act:

“[W]hen it comes to a drug that is currently listed in schedule I, if it is undisputed that such drug has no currently accepted medical use in treatment in the United States and a lack of accepted safety for use under medical supervision, and it is further undisputed that the drug has at least some potential for abuse sufficient to warrant control under the CSA, the drug must remain in schedule I.”

As it happens, marijuana is a Schedule I drug. The government says it has a potential for abuse, which it doesn’t, and that it has no accepted medicinal use, which it clearly does. According to a new study, cannabis has the capability to cause Crohn’s Disease to enter remission in 45% of patients.

The study examined 21 people with Crohn’s Disease. Half were given cigarettes without cannabinoids and the other half were given joints to smoke. The joints contained 23% THC and .5% CBD. 45% of the people given joints every day for eight weeks experienced complete remission of their Chron’s disease.

The remainder reported that symptoms were approximately half as severe. They were able to eat and sleep without so much pain.

“Subjects receiving cannabis reported improved appetite and sleep, with no significant side effects,” reports the study.

This is the first time a placebo-controlled trial has been conducted on cannabis and Crohn’s Disease. With any luck, more will follow.

Just one more ailment cannabis may cure.


Health Benefits of eating Banana flower

Banana flower

Advantages of eating Banana flower

  • Regulates menstrual cycle
  • It is the best food for lactating mothers and diabetes patients
  • Cures Anemia
  • Provides effective function of kidneys
  • Relieves you from constipation
  • Cures Ulcer
  • Reduces high blood pressure
  • Strengthens uterus

Step 1: Take a pan and add in 2 table spoon of oilimages

Step 2: Add in mustard seeds and wait until it sputters

Step 3: Now add in Chopped onion & green chilies, sauté them well

Step 4: Next include the chopped banana flower (drain well) in the pan

Step 5: Add salt, turmeric, Hing, curry leaves and Daniya/corriander powder (To taste)

Step 6: Splash a little water into the pan and cover it with a lid, wait until it is cooked

Step 7: After the dish is almost ready, put in the grated coconut and stir well

Step 8: The dish is now ready to devour!

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