Sorry everyone, me again! I was alerted to the fact yesterday that the link to Sue Hansard's article on LinkedIn was not linking, it is now! Also I delighted to alert practitioners to new women's health courses from Physiotherapists Hannah Poulton and Sarah Norris at their new company venture EverthingNatal; read more in newsmagazine. Right, promise that's it!Have a great bank holiday Monday x
2nd May 2022
Good Morning and a warm welcome to the 20th Issue of the PhysioPod NewsMagazine (aka PNM for short!)
We are incredibly proud this month to introduce to you the new vocaSTIM® Master, a professional therapy and diagnostic device for paresis-related swallowing and voice disorders that can be caused during Struma surgery, cancer surgery and reflux, and after Stroke.
Stroke is a major health problem in the UK. Each year, approximately 110,000 people in England, 11,000 people in Wales and 4,000 people in Northern Ireland have a first or recurrent stroke.
VocaSTIM therapy has been developed for use in Neuro-Rehabilitation, ENT Doctors and Speech Therapists. After guidance and instruction, this device can be safely and easily used by patients in clinic, making it a time effective resource and cost-efficient modality.
NICE Guidelines (2018) recommended the use of Transcutaneous Neuro Muscular Electrical Stimulation (TNMES) for adult stroke rehabilitation and as with all of PHYSIOMEDs innovative products, safety requirements are surpassed and technical specification and quality are extremely high.
We are very excited at the potential of this treatment to help those suffering the affects of stroke. Our parents both suffered strokes at relatively early ages and so the potential to help others in stroke rehabilitation really is incredible for both of us.
NICE Guidelines (2022) on the pausing of liposuction for lipoedema have evoked many passionate responses throughout the Lipoedema community. This month, Bel Hardman and Jacqueline Smith share their views and if you didn’t get chance to listen to the interviews with Sharie Fetzer, Chair of Lipoedema UK and Marie, on this topic on Woman’s Hour, then the link is included.
Christine Talbot, a regular contributor to the PNM emailed Woman’s Hour following the interviews with her thoughts and we include an extract of these in reference to Manual Lymphatic Drainage (MLD) in the UK and why it doesn't receive the high praise it deserves unlike the high regard with which it is held in the rest of Europe.
Moving forward, Lymphoedema Training Academy share some exciting news - the first ever, Lipoedema Management Training Course starts in May, with a host of international experts on Lipoedema. We note that with the exception of one expert, Julie and I are proud to say that we have met all - such an amazing line up and such a step in the right direction to create the services that ladies living with Lipoedema so rightly deserve.
We all know that there should be no place for bullying in the workplace, Nicki Eyre of Conduct Change invited me to join an online webinar with special guests in her latest strand 'Workplace Bullying - why do we need a Trauma Informed Approach?' (link included). Perhaps you or someone you know at work has changed and become withdrawn, perhaps they are being bullied? Please do take a listen to this..
A personal thank you to all of you who reached out to express their sadness at our young family member diagnosed with Functional Neurological Disorder (FND). Messages have led us to find a lovely young lady Meg, 21, who shares her life of living with FND on social media, the video we share has had 388,400 views to date. Some may find some of the images distressing, so please note the lead message before watching. FND is another hidden disability that so many live with, and yet, if you don’t know someone with it, you will most likely never find out about it.
We welcome a new contributor this month, Gabriela Galdámez Torres, a medical specialist in rehabilitation medicine and Master in Gerontology from Honduras, who shares a special Case Report: ‘Facial Paralysis and Use of Deep Oscillation in a Physiotherapy Treatment Protocol’. Super results, Gabriela is changing lives and will share more case studies in the coming months.
Huge thanks to our regular contributors Gavin Neate and Dean Attwood, who, without fail, manage to each month to get us thinking outside of the box!
Finally, Julie and I are lucky to live in such a wonderful community and we have two very special reports of fundraising for the Ukraine; one from Hugo's Bar in Sherwood all about their 4 day visit to Poland to support the Ukrainian refugees with aid and donations. We also feature our Sister-In-Law, Anna Harper, who together with her good friend Stefka Samus, held a charity event for emergency aid to Ukraine in their local Bridge club.
Take good care on and all and enjoy your Bank Holiday Weekend…
From the leaders in electrotherapy PHYSIOMED ELEKTROMEDIZIN AG in Germany, PhysioPod/PhysioEquipment UK are proud to introduce the vocaSTIM MASTER which is an innovative, study-proven concept for diagnosis, therapy, therapy progress control and, if necessary, independent therapy/independent voice training by the patient with laryngeal paresis (NMEPS) and dysphagia.
With special thanks to
Gabriela Galdámez Torres Medical specialist in rehabilitation medicine, Master in Gerontology. Private practice- Hospital La Policlinica, Honduras.
"We thank each patient for their confidence in us, and hope to continue to help many more patients. All photos are with the patient's permission"
Patient is 20 years old, has completed secondary school, does not work. He lives in rural Honduras, where he occasionally supports his family with livestock and agriculture.
He has had facial paralysis on three occasions, the first time was at the age of eight in 2010, then in 2016, 2017.
Consultation on this occasion (30th August) was due to loss of strength and mobility of the facial mimicry muscles of the right side of the face; as well as drooling and a lot of epiphora (excessive eye tearing). Consultation was three days after the onset of symptoms. No dizziness or loss of balance was reported.
Tinnitus (ringing in the ear), especially five days prior to the consultation.
No recent infections, COVID-19 negative. Vaccination schedule included two doses of anti-COVID vaccine.
Neurosurgery referred him for a brain MRI scan, which was normal.
History of chronic left ear infections.
No alterations of strength in upper or lower limbs,
Vital signs stable, normal gait, monopedal balance unaltered. Normal coordination tests.
Evident facial asymmetry, with deviation of the lips to the left
Life has a way of reminding us; Sometimes in a funny way, sometimes not, sometimes it can come with a sting in its tail and others, well we just get a gentle nudge.
And for me this week, that’s what I’ve had.
I have had, like most I’m sure, a very busy week. No one held a gun to my head. It was me myself and I.
Running my own business with Coaching and Therapy, working on and growing my Mental Health Training and Support Company, making time for my two boys, life and house admin, keeping in touch with friends, food shopping, eating healthy, going to the gym, grabbing a walk, books, learning and studying, my list of jobs, then time for me… But, like most can relate, this is the short list….
The life Trifecta - Work and Money, Family & Friends and Health and Personal time.
Keeping things in balance is not always possible. But I feel keeping things in check is.
I have pointed towards ‘Self-Care’ and our self-language now a few times.
It really is such an important focal point.
We are ALL under a lot of this kind of pressure and it’s true, a lot of it can come from our own doing. But how we respond to it, our reaction, our follow through and how we speak to ourselves along this road of life, we must force our hand and get really honest with ourselves, the only real thing we can control is what we think; The language, the tone, the direction the meaning, the power and the purpose.
This month I had every intention of writing about ‘Mind Set’ asking questions to ascertain whether you are of a 'fixed'' or 'growth' mindset. I had started to set up questions, examples and hoped to create an interesting blog for you all to read, to test yourself and then had thoughts to create a few tools to help you moving forward.
PhysioPod were delighted to feature in the latest magazine from FHT and provide just some of our practitioner feedback...
Gavin Neate, CEO and Founder of Neatebox Limited (Creators of the WelcoMe App) empowers all disabled people by reducing anxiety and increasing confidence in their real world interactions.
"Okay, I admit this is a bit of a clickbait headline if ever there was one. The last thing we would ever want to do is to encourage companies not to train their staff especially when it comes to interacting with disabled and vulnerable customers.
So, let me clarify..
Traditionalstaff training doesn’t work!
Oops, I think I’ve done it again. Traditional staff training DOES work, it just doesn’t work as well as it could. I
t’s well known that trained knowledge has a “half life“.
Think about the French you learnt at school. Without a regular holiday to France or some well positioned French friends…it’s gone.
Well, staff training isn’t really that different. You learn something, probably in a class room sitting though a lecture or online via a staff induction webinar, and then within a couple of days its gone… but it isn’t until you read the statistics around training in general that you realise just how much of a problem this is and how it is affecting not only disabled consumers but customer service staff as well.
Worse still, is the plaque on the wall or the signature on the certificate that states that training has been delivered and that a course has been passed as this in itself can lead to a false sense of security.
These stats are alarming enough but with billions being spent on staff training and 70% of disabled people still reporting they have received poor customer service then it is obvious there is an issue here that needs to be addressed.
So, we’ve just pulled our collective heads out of the sand. What’s next? Well, all is not lost and I am happy to say that there are some amazing organisations working in the UK who are increasingly addressing the challenges with very real multifaceted solutions and specifically utilising the super power that is experience-based-training i.e. training that is delivered by subject matter, experts with lived experience themselves presented in a way that engages attendees physically and importantly, emotionally.
It is over 25 years ago now ,but the very first time I met a guide dog owner I messed up, or at least I felt I had when I thought saying, “I see what you mean” might have been disrespectful. I was very lucky, my interaction was part of a training exercise, one with a real guide dog owner, one who expected me to mess up and allowed me to do so in a truly safe environment. The interaction was so powerful that it is still imprinted in my mind to this day.
This week I met with Alex Winstanley of Happy Smiles Training CIC based in Wigan after seeing the following video on YOUTUBE..
INTERVENTIONAL PROCEDURES GUIDANCE
By Mary Warrilow – Nurse Consultant, Lipoedema UK &
Sharie Fetzer – Chair, Lipoedema UK
The document below is based on Lipoedema UK’s response to the National Institute for Health and Care Excellence (NICE) 2021 invitation to Lipoedema UK to contribute to the development of a piece of Interventional Procedures Guidance: non-cosmetic liposuction in the treatment of chronic lipoedema IP1843 (see page 12)
PhysioPod listened avidly to this interview and were pleased to see Lipoedema brought to the attention of Radio 4 listeners, another step forward in raising awareness of this chronic disease, despite the disappointing decision from the NICE committee.
Regarding the NICE decision, Lipoedema UK shared the following statement in their latest newsletter:
"NICE are concerned that there are so few studies published in English to date on the effects of liposuction on lipoedema and the safety aspect. This has delayed NICE approving the procedure until new evidence is published, but their caution has made it much harder to gather evidence of the benefits in the UK. A worrying aspects of the current situation is that some surgeons may operate on lipoedema patients without any previous training in the specialist surgical skills required.
One of Lipoedema UK’s new key targets is working with all plastic surgeons, so that when NICE next review their guidelines there will be more awareness of the specialist techniques required to get the best outcomes. We also feel it is essential to ensure all patients receive appropriate compression garments, aftercare and support from their surgeon and GP.
In the meantime Lipoedema UK will continue to work with reputable and ethical surgeons abroad who have already treated hundreds of UK patients with outstanding results and continue to operate. We appreciate NICE’s concerns over safety and will work hard to gather evidence for their next review."
"After years of planning and anticipation (because this course was planned to launch in June 2020!) we are honoured and excited to present the first ‘Lipoedema Management’ training course in the UK, supported by Lipoedema UK.
A host of international and expert professors, doctors and professionals have dedicated their time to ensuring you get, what we believe to be essential education to consider and treat patients and clients with Lipoedema.
The course covers the extensive knowledge and latest considerations and innovations on Lipoedema, as well as conversing differential diagnosis and raising awareness to conditions such as elhor danlos and dercums.
Our clinical training team will provide expertise in the required specialist clinical skills, ensuring the best selection and fit of compression, of improving bandaging and benefits and changes to MLD protocols, as well as understanding pre and post operative treatment and assisting with the challenges to mindset and lifestyle that this chronic condition can cause.
This training will qualify you as a certified LTA Lipoedema Therapist.
Live Webinars: 9th & 18th May 2022
Practical Skills Workshops: 25th & 26th May 2022.
£545.00 (exc VAT)
FREE ‘All about Lipoedema' book worth £25 to anyone that joins us before the training and commits to the practical days
A young family from Sherwood, Adam, Katharine and Hugo in Nottingham, make a round trip to Poland to offer their help and assistance with aid and donations to Ukrainian refugees.
"So where do I start? We are a small independent cocktail bar in Sherwood called HUGO’s 1628 miles from Kyiv, and when the war in Ukraine hit - we decided to help as much as we could!
My husband, Adam and myself Katharine, both have Grandparents who are Polish-born and escaped during the Second World War. We therefore decided that we should help the refugees as much as we could.
The journey started with us collecting items to ship over to Zamo??, on the border with Ukraine. We put a call out to the local area and we were inundated with donations from a lot of people! The feelings we had were so overwhelming and humbling, that so many people wanted to help. Boxes were piled high to the ceiling and we had many volunteers helping us to sort the donations. I never really expected to have so many items to sort, but also so much help! At this point we wanted to do even more - which is when we decided we could fly over and help in person, which was cheaper than shipping. We started a Just Giving page and explained exactly where the money was going to be used.
Ten days later, we were on our way to the airport. Me being me, I arranged with Raddison Blu for a free suite to stay in and free car parking. They were so happy to help - which is the feeling we had from everyone. People just want to help. Our 5 year old son, Hugo, came with us on our adventure and understood that we were there to help other people. We have never shied away from the true facts of what happens during a war and he was outraged, just like us.
DAY ONE OF FOUR
We started our journey in a small town called Biala, where my Grandparents are buried. This was our base - we literally just slept there - even though the lodge we stayed in was so beautiful, we never really got to use it much! Day one was more about travelling and finding out what the charities needed.
Our wonderful Sister-In-Law, Anna Harper, and her good friend Stefka Samus, recently organised a fundraising event at the Nottingham Bridge Club, raising a massive £2338 for the Emergency Help Ukraine Appeal. Huge congratulations ladies!
Sue is a Lymphoedema Nurse Specialist, Writer, Poet
"I’ve worked in Lymphoedema Management since 1997 and over the years have developed a special interest in Head and neck Lymphoedema (HNL).
Way back in 2001, I met my first patient who was coming to terms with neck and facial swelling following extensive surgery and radiotherapy for throat cancer. He was a fit 50 year old, with a wife and young family to support. The cancer diagnosis 12 months previously had catapulted him and his family onto the runaway train of tests, weeks of treatment, and a rapid physical demise due to weight loss caused by the side effects of the life-saving treatments..
Everything that he defined himself by slipped away and on top of this the facial swelling changed his appearance, the permanent tracheostomy (breathing tube) meant that the voice he knew, was lost and he could no longer eat normal food.
Physically and psycho- emotionally he was learning how to accept his altered self.
At that time, most Lymphoedema services used Manual Lymphatic Drainage (MLD) and skin care as the mainstay of treatment for HNL.
Facial compression was only available as custom made items and very few limb compression garments were on prescription. Technology was developing in the treatment of limb Lymphoedema but not for HNL.
So this gentleman attended several times/ week initially and then on a weekly basis for many months. The treatment did reduce his facial and submandibular (jawline) swelling and helped to ease the internal swelling he experienced. Our physiotherapist was able to advise exercises to help improve neck and shoulder movement, which was limited due to surgery and radiotherapy scarring.
Since then I have treated many other men and women who had developed HNL following cancer treatments, trauma and other surgeries. Invariably a referral to Lymphoedema services came late in their recovery from their original cancer treatments.
Sometimes failed attempts to drain swelling with a needle, or a cellulitis infection would finally lead to onward referral. Often patients are told that the swelling will `go away on its own, in time’. It won’t.
But as with secondary Lymphoedema in any body part, the earlier a Lymphoedema trained therapist can assess and initiate an individualised treatment plan, the better the outcome for the patient. As any fibrosis softens and the lymph fluid starts to drain away, function returns.
Speech, swallowing, chewing, head, neck and shoulder mobility all improve. The skin improves. Muscle tone is regained. Confidence returns. Pain and discomfort reduce.
Before the pandemic 'floored us all’ the Lymphoedema team at Mary Ann Evans Hospice in Nuneaton, were forging excellent links with the Head and Neck Oncology team at University Hospital Coventry and Warwick. We met with lead CNS and shared advice and knowledge which they began to incorporate into the care of their patients. And we started to see an increase in early referrals for post-operative patients. At follow ups, they in turn saw noticeable improvements in their patients symptoms and improved QOL. (Quality of life).
I think the trials that the NHS and all health care givers have had to cope with during the pandemic has set us back. Many specialist clinics are still not fully back to capacity, budgets have been shrunk, and training and expertise-sharing opportunities are less available. Everyone is struggling to get patients seen, get waiting lists down, get surgeries done.
NOW we need all HCP’s to start working holistically, and referring to relevant specialisms to meet each patient’s needs to give them the best possible outcomes.
I really feel a strong need to advocate for this patient group. This is why I wrote this article on LinkedIn Pulse...
"The British Lymphology Society cites an incidence of lymphoedema in 90% of patients who have had treatment for head and neck cancers. This is supported by a significant number of papers, articles and studies world wide.
In my own experience people who have had surgical intervention, including excision of lymph nodes and those who have undergone radiotherapy for cancers in the head and neck, ALL experience lymphoedema (HNL) . Most likely this is developing immediately following surgery/radiotherapy due to the resultant depletion in lymph drainage . As post-operative swelling subsides, patients report persistent swelling both externally apparent, and internally felt.
HNL can affect any part of the oral cavity, trachea, face, ears, including ear canal and inner ear, eye lids, nose, scalp and neck. The tissue trauma of surgery, removal of lymph nodes, and radiotherapy all effectively deplete or damage the complex system of lymphatic vessels which drain the numerous intricate structures of the face, head and neck...."
Gaynor Leech of LWO Community, has taken a well deserved #BlogHoliday this month, but as always, has already provided great information on Spring-cleaning our skincare on a new page on her excellent and informative website.
We look forward to seeing you on Monday 23rd May at Holistic Health Gaynor! x
Michelle is another super asset adding to the growing army of UK and Ireland Deep Oscillation Practitioners. Michelle is listed on the Therapist Map in three areas, sports, scars and complementary.
Later this year Michelle will embark on a Vodder MLD Course, getting a listing in MLD too. Really great to have you on board Michelle. aAlready she is loving the therapy. She first learned about the therapy in the bonus interviews on Emma Holly's scar course.
Nicki Eyre FRSA
Workplace Bullying awareness and prevention to support compassionate workplaces
"Trauma informed approaches are widely used in organisations supporting people who have suffered abuse, so how does that translate to dealing with workplace bullying cases?
We will explore what is meant by a trauma informed approach; the different ways in which workplace bullying impacts on individuals and can lead to trauma; and how this shows up differently to other trauma, supported by workplace bullying trauma expert, Evelyn M Field OAM FAPS. Pat Ferris MSW, RCSW, M.SC., Ph.D. also provides her expert insights into how existing processes can cause secondary harm, so anyone in the workplace who deals with an allegation of bullying and anyone in healthcare who provides support to someone who has experienced this harm needs to be aware of how to reduce risks of adding another layer of injury in workplace bullying trauma cases"
My first thought when I read the title, 'Liposuction for Chronic Lipoedema' was to focus on the term chronic, chronic means ‘an illness persisting for a long time or constantly reoccurring’. On the basis of that meaning, all lipoedema is considered chronic. However, there is no real specification from NICE if this treatment will be considered for all or just those whose quality of life and mobility is impacted.
Most of us in the lipoedema community have already read this report and were obviously disappointed by the outcome, however this is not unexpected and it raised fair points of concern as one would expect. It states that the evidence on the safety and efficacy of liposuction for chronic lipoedema is inadequate. The issue is the lack of research and whilst there is no research from the UK, NICE did consider a number of small studies from Europe and are looking towards the completion of a German research study that they wish review once complete. I believe that this research study is being conducted by Dr Ghods team in Berlin, I’m unsure when this research is due to be completed, however NICE state their next review in this matter will not be until March 2025.
The report details the requirements of any such research, however, with only a handful of surgeons in the UK skilled to offer liposuction for lipoedema I feel that other countries such as Germany are likely better positioned to conduct this research based on the number of surgeons and patients available to participate in said research.
The report then states: ‘this procedure should only be used in the context of research’. They further go on to state what this means: ‘clinicians should only carry out these procedures in the context of formal research studies. A research ethics committee needs to have approved their use. We make this recommendation if procedure is still considered to be experimental, or because of unresolved uncertainties.’
I question if the statement: ‘this procedure should only be used in the context of research’ is the reason we have seen all but one UK surgeon withdraw liposuction for lipoedema surgery. My research has shown that the majority of UK surgeons offering liposuction for lipoedema are plastic surgeons and their governing body has stopped them performing these surgeries which has led to issues with their insurance. There is just one surgeon (Dr Gupta in Hertfordshire) who I believe is an aesthetic surgeon and is under a different governing body therefore he is able to still proceed with liposuction for lipoedema surgery. This is a huge blow to ladies in the UK who cannot travel outside the UK due to personal or health reasons for what we, those of us who have had surgery, would call a life-altering procedure. This situation is currently under consultation between the surgeons and their governing body as I type.
Micro vascular surgery in both limbs, which took 6 hours, have changed this teenagers life forever. Such lovely news ❤️
Dr Nilesh Satbhai, Consultant Plastic, and Reconstructive Microsurgeon said, “The patient came to the hospital with a history of swelling in both lower limbs and groin, and was bed-ridden. We diagnosed him with a primary lymphoedema, commonly known as elephantiasis.”
“Puraw was advised to undergo surgery for the treatment of lymphedema. After optimal preoperative preparation, he underwent vascularized lymph node transfers (VLNT) for both the lower limbs. VLNT is an advanced microvascular procedure, in which a few normal lymph nodes are taken from a distant part (such as the neck, chest, abdomen, etc.) and they are implanted into the limb affected by lymphedema. These transferred lymph nodes then help to drain the excess fluid from the limb and reduce the limb swelling. The surgery lasted for 6 hours. The boy was discharged after 10 days. He recovered well after the microvascular surgery on both lower limbs and the swelling on both his legs reduced significantly. The surgery has helped the boy to become mobile, playful, and active again. The parents are advised to perform a special type of massage called ‘manual lymphatic drainage. The parents are relieved, as the child is no longer dependent on them for his basic hygiene and personal activities.”
"Deep Oscillation is not only used in the clinic for skin health but for overall wellbeing. The therapy here is to aid circulation and arthritis. This gentleman has suffered from acute pain and discomfort while walking and just two sessions has eased pain and twitching. This therapy is such a blessing to the clinic and for my clients"
By Jaqueline Smith, diagnosed (privately) with Stage 3 Type I/II Lipoedema in her knees, upper and inner thighs, hips, buttocks and arms.
"Nerves are raw amongst the Lipoedema community following NICE's decision to suspend Liposuction for chronic lipoedema (IP1843/1). We now have to wait for further evidence to emerge to support the procedure from a randomised controlled trial currently in progress in Germany. This decision will adversely affect the lives of millions of women living with Lipoedema as the disease progresses and in many, leading them to lives in a wheelchair as their mobility has deteriorated.
Going forward I ask two questions:
What is the duty of care to provide treatment for patients who suffer with Lipoedema?
Whose responsibility is it to provide that duty of care?
The NICE document mentions conservative treatments as being available, such as manual lymphatic drainage (MLD) and compression, but in truth, this isn’t always provided on the NHS, and actually, there is very little help provided to those with a Lipoedema diagnosis.
Every day, we see this on support groups, growing evidence of just how lacking the duty of care is. Ladies feel they are discriminated against for having Lipoedema; as though their appearance is their fault or that their weight, is their fault. They feel failed on every level.
Like many ladies I had to seek my own help, my own diagnosis. My GP admitted he was at a loss as to where to refer me and asked me for advice on whom he should contact. Fortunately for me, my own GP is considerate, as you'd expect a GP to be, but not all are. You hear some dreadful stories, heart-breaking, sad, neglectful, lipoedema ladies are angry.
So, though the NICE decision was very disappointing, it was not a shock to many of us, it just really adds to the way we have been treated for many years. We must now wait for further medical evidence. Yet they don't say how long the German study will take. They just don't say. Neither do they reassure desperate ladies who are suffering in severe pain and needing this surgery how much longer they are expected to wait to receive any care? My view is that this is complacent and shows no respect or responsibility for the future of these patients.
Given that many ladies in late stage 3 have already been misdiagnosed and waited many years for help, hoping for a positive response from NICE. There is no information in the report that suggests what efforts are going to be made mandatory. i.e., future medical schooling for this type of surgery on the NHS. Or lipoedema clinics. Or care. In fact, nothing in that report has a solid Duty of Care Plan at all.
Let me provide a picture of what is and isn’t happening on the NHS.
There is no MLD for Lipoedema on the NHS, Private care for MLD is sought by those patients fortunate enough to afford it.
Compression garments are not routinely supplied. Women are having to fight for this very necessary treatment which is set out in clinical guidelines by expert doctors.
There are no certified clinicians for Lipoedema.
There are no specific clinics for Lipoedema
There are no specific surgeons in NHS hospitals – just one in Scotland.
There is a severe lack of GPs who understand Lipoedema.
Women are referred, if diagnosed by private doctors to the odd one or two doctors across the whole of the UK. ......... continued
Last month I wrote about FND, which a young family member has recently been diagnosed with. Zoe Pearce messaged my after reading this and alerted me to Meg Jacks who has this too and is very active in promoting awareness of this hidden disability...
A clinical trial has shown that it can predict AD progression with 88% and 84% accuracy in American and Japanese patients, respectively.
With thanks to Adam Ang of Mobile Health News
"Fujifilm Corporation has developed AI technology that can predict whether patients with mild cognitive impairment will progress to Alzheimer's disease within two years.
According to a press statement, the AI Technology for AD Progression Prediction has been found to have high generalisability, predicting patients who would progress to AD with high accuracy, even for subjects from different cohorts.
The AI predictive technology was built using Fujifilm's advanced image recognition technologies. Using both AI and deep tech, atrophy patterns as seen on 3D MRI brain images were extracted and calculated from the hippocampus and the anterior temporal lobe, both regions that are strongly correlated with the progression of AD. From these patterns, AD progression is predicted.
WHY IT MATTERS
It is projected that the number of patients with dementia around the world will grow to approximately 139 million by 2050 from about 55 million today. Rising cases of Alzheimer's disease, the most common cause of dementia, are also predicted to continue.
Despite advances in AD treatment in recent years, many clinical trials have not been successful given the low percentage of patients who progress from mild cognitive impairment to AD within two years and many of such patients remain unchanged even if placed under placebo.
Fujifilm and NCNP aim to address these limits and contribute to accurately evaluate the efficacy of drug candidates for treating AD."
Susan O’Hara is from Yukon, Oklahoma, and is the founder of LegsLikeMine, LLC. Susan has suffered from lipedema for more than two decades, starting with the birth of her first child in 2001. Her condition progressed slowly through various hormonal changes, but flared to a new level with a significantly stressful work-related event that served as the catalyst for seeking surgical treatments.
Like many, Susan went undiagnosed for almost 20 years, suffering pain and slowly losing mobility. Despite diet, exercise, and having two weight-loss surgeries, the condition persisted. After numerous MRIs, knee surgeries, x-rays, and a bout with tendonitis, a technician asked Susan who was treating her LYMPHEDEMA, and this got her connected to support groups, who actually saw her pictures and suggested she had LIPEDEMA.
Susan’s informal, online diagnosis allowed her to begin research, finding specialists and therapists familiar with lipedema, who were able to clinically diagnose and provide treatment. Through her research she discovered compression wraps and massage techniques to help manage her condition. In 2021, Susan had three Lymph-Sparing Lipectomy surgeries, and incorporated a regular swimming routine into her life to help manage lipedema.