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Overview and review document October 2024
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DownloadOverview and review document 2024
TASC Project Review 2024 (pdf)
DownloadTestimonials from some of the participants of the Thalassaemia and Sickle Cell Health & Wellbeing Project delivered by Phasma. Recordings are published with written consent from participants featured.
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Thalassaemia is the name for a group of inherited conditions that affect a substance in the blood called haemoglobin. People with thalassaemia produce either no or too little haemoglobin, which is used by red blood cells to carry oxygen around the body. This can make them very anaemic (tired, short of breath and pale).
It mainly affects people of Mediterranean, south Asian, southeast Asian and Middle Eastern origin. There are different types of thalassaemia, which can be divided into alpha and beta thalassaemias. Beta thalassaemia major is the most severe type. Other types include beta thalassaemia intermedia, alpha thalassaemia major and haemoglobin H disease. It's also possible to be a "carrier" of thalassaemia, also known as having the thalassaemia trait. Being a beta thalassaemia carrier will not generally cause you any health problems, but you're at risk of having children with thalassaemia.
Symptoms of thalassaemia
Most people born with thalassaemia experience health problems from a few months after birth. Less severe cases may not be noticeable until later in childhood or even until adulthood.
The main health conditions associated with thalassaemia are:
anaemia – severe tiredness, weakness, shortness of breath, pounding, fluttering or irregular heartbeats (palpitations) and pale skin caused by the lack of haemoglobin.
too much iron in the body – this is caused by the regular blood transfusions used to treat anaemia and can cause problems with the heart, liver and hormone levels if untreated.
Some people may also have delayed growth, weak and fragile bones (osteoporosis), and reduced fertility.
Causes of thalassaemia
Thalassaemia is caused by faulty genes that affect the production of haemoglobin. A child can only be born with thalassaemia if they inherit these faulty genes from both parents. For example, if both parents have the faulty gene that causes beta thalassaemia major, there's a 1 in 4 chance of each child they have being born with the condition. The parents of a child with thalassaemia are usually carriers. This means they only have 1 of the faulty genes.
Screening and testing for thalassaemia
Thalassaemia is often detected during pregnancy or soon after birth. Screening for thalassaemia in pregnancy is offered to all pregnant women in England to check if there's a risk of a child being born with the condition, and some types may be picked up during the newborn blood spot test (heel prick test). Blood tests can also be carried out at any age to check for thalassaemia or to see if you're a carrier of a faulty gene that causes it.
Treatments for thalassaemia
People with thalassaemia major or other serious types will need specialist care throughout their lives.
The main treatments are:
blood transfusions – regular blood transfusions treat and prevent anaemia; in severe cases these are needed around once a month.
chelation therapy – treatment with medicine to remove the excess iron from the body that builds up as a result of having regular blood transfusions; some people with thalassaemia get a build-up of iron even without transfusions and need treatment for this.
Eating a healthy diet, exercising regularly and not smoking or drinking too much alcohol can also help you stay as healthy as possible.
The only possible cure for thalassaemia is a stem cell or bone marrow transplant, but this is not done very often because of the risks involved.
Outlook for thalassaemia
Although the main health problems associated with thalassaemia can often be managed with treatment, it's still a serious health condition that can have a significant impact on a person's life. Even in mild cases, there's still a risk you could pass on a more serious type to your children. Without close monitoring and regular treatment, the most severe types can cause serious organ damage and be life threatening. In the past, severe thalassaemia was often fatal by early adulthood. But with current treatments, people are likely to live into their 50s, 60s and beyond.
Tips on staying well*
· If you need regular blood transfusions schedule these so that your Hb is kept above 95 g/l
· Take your chelation therapy as prescribed (it will not work to give you alive if it stays in the box!)
· Make sure infections and any complications are treated quickly
· Maintain a good balance of nutrition and activity
· Ensure your vaccinations are up to date
· Avoid smoking and consuming a lot of alcohol
· Look after your mental health- it is just as important as your haemoglobin and iron levels- speak to someone if you are finding things difficult! Do not suffer in silence!
· If your spleen has been removed- Take penicillin twice a day for life.
· Attend your clinic appointments on time so that your team can monitor your overall health and complications of thalassaemia. This will also give you the chance to discuss any of your concerns and hear about trails in thalassaemia that may be right for you!
*https://ukts.org/life-with-thal/ - the UK thalassaemia Society
Phasma therapies for thalassaemia:
pain management, breathing, relaxation and lifestyle management. After a full initial consultation, a journalled plan of structured interventions follows:
Traditional Usui Ryoho-based Phasma Reiki for Pain Management, Anxiety, Fatigue, Depression, Quality of Life, Mood & symptoms.
Hypnoesitherapy for pain control - This is an amazing method of drug free pain control and also of psychological self-healing for pain management. Once taught, the participant will be equipped with a fast and effective pain management system which can be utilised regularly or as and when needed.
SnapBack – hypnotherapy sessions for anti-depression, mental wellbeing strengthening, mood stabilisation and breaking negative habits & thought processes.
Guided Meditations for relaxation, breathing techniques, insomnia rectification, sleep apnoea, pain management, grief, self-confidence & holistic care.
Parts Therapy & Inner Child Therapy for emotional release, inner conflict, core beliefs and emotional stabilisation.
For more information, please contact us for a FREE no obligation quotation.
Sickle cell disease is the name for a group of inherited health conditions that affect the red blood cells. The most serious type is called sickle cell anaemia.
Sickle cell disease is particularly common in people with an African or Caribbean family background.
People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels. Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms.
Symptoms of sickle cell disease:
People born with sickle cell disease tend to have problems from early childhood, although some children have few symptoms and lead normal lives most of the time.
The main symptoms of sickle cell disease are:
- painful episodes called sickle cell crises, which can be very severe and last up to a week
- an increased risk of serious infections
- anaemia (where red blood cells cannot carry enough oxygen around the body), which can
cause tiredness and shortness of breath
- Some people also experience other problems, such as delayed growth, strokes and lung
problems.
Treatments for sickle cell disease:
People with sickle cell disease need treatment throughout their lives. This is usually delivered by different health professionals in a specialist sickle cell centre.
It's also important for people with sickle cell disease to look after their own health using self-care measures, such as by avoiding triggers and managing pain.
A number of treatments for sickle cell disease are available, for example:
- drinking plenty of fluids and staying warm to prevent painful episodes
- painkillers, such as paracetamol or ibuprofen (sometimes treatment with stronger
painkillers in hospital may be necessary)
- daily antibiotics and having regular vaccinations to reduce your chances of getting an
infection
- a medicine called hydroxycarbamide (hydroxyurea) to reduce symptoms
- regular blood transfusions if symptoms continue or get worse, or there are signs of damage
caused by sickle cell disease
- an emergency blood transfusion if severe anaemia develops
- The only cure for sickle cell disease is a stem cell or bone marrow transplant, but they're
not done very often because of the risks involved.
Phasma therapies for sickle cell focus on the key areas of pain management, breathing, relaxation and lifestyle management. After a full initial consultation, a journalled plan of structured interventions follows:
Traditional Usui Ryoho-based Phasma Reiki for Pain Management, Anxiety, Fatigue, Depression, Quality of Life, Mood & symptoms.
Hypnoesitherapy for pain control - This is an amazing method of drug free pain control and also of psychological self-healing for pain management. Once taught, the participant will be equipped with a fast and effective pain management system which can be utilised regularly or as and when needed.
SnapBack – hypnotherapy sessions for anti-depression, mental wellbeing strengthening, mood stabilisation and breaking negative habits & thought processes.
Guided Meditations for relaxation, breathing techniques, insomnia rectification, sleep apnoea, pain management, grief, self-confidence & holistic care.
Parts Therapy & Inner Child Therapy for emotional release, inner conflict, core beliefs and emotional stabilisation.
For more information, please contact us for a FREE no obligation quotation.
Trigeminal neuralgia (TN) is sudden, severe facial pain. It's often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums. It usually happens in short, unpredictable attacks that can last from a few seconds to about 2 minutes. The attacks stop as suddenly as they start.
In most cases, trigeminal neuralgia affects just one side of the face, with the pain usually felt in the lower part of the face. Very occasionally the pain can affect both sides of the face, although not usually at the same time.
People with the condition may experience attacks of pain regularly for days, weeks or months at a time. In severe cases attacks may happen hundreds of times a day.
It's possible for the pain to improve or even disappear altogether for several months or years at a time (remission), although these periods tend to get shorter with time. Some people may then develop a more continuous aching, throbbing or burning sensation, sometimes accompanied by the sharp attacks.
Living with trigeminal neuralgia can be very difficult. It can have a significant impact on a person's quality of life, resulting in problems such as weight loss, isolation and depression.
Trigeminal neuralgia is usually caused by compression of the trigeminal nerve. This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.
The compression of the trigeminal nerve is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.
Trigeminal neuralgia can also happen when the trigeminal nerve is damaged by another medical condition, such as multiple sclerosis (MS) or a tumour.
The attacks of pain are usually brought on by activities that involve lightly touching the face, such as washing, eating and brushing the teeth, but they can also be triggered by wind – even a slight breeze or air conditioning – or movement of the face or head. Sometimes the pain can happen without a trigger.
Trigeminal neuralgia affects more women than men, and it usually starts between the ages of 50 and 60. It's rare in adults younger than 40.
Symptom triggers:
Attacks of trigeminal neuralgia can be triggered by certain actions or movements, such as:
· talking
· smiling
· chewing
· brushing your teeth
· washing your face
· a light touch
· shaving or putting on make-up
· swallowing
· kissing
· a cool breeze or air conditioning
· head movements
· vibrations, such as walking or travelling in a car
However, pain can happen spontaneously with no trigger whatsoever.
Further problems:
Living with trigeminal neuralgia can be very difficult and your quality of life can be significantly affected.
You may feel like avoiding activities such as washing, shaving or eating so you do not trigger the pain, and the fear of pain may mean you avoid social activities. However, it's important to try to live a normal life and be aware that becoming undernourished or dehydrated can make the pain worse.
The emotional strain of living with repeated episodes of pain can lead to psychological problems, such as depression. During periods of extreme pain some people may even consider suicide. Even when pain-free, you may live in fear of the pain returning.
Evidence suggests that in up to 95% of cases, trigeminal neuralgia is caused by pressure on the trigeminal nerve close to where it enters the brain stem, the lowest part of the brain that merges with the spinal cord.
This type of trigeminal neuralgia is known as primary trigeminal neuralgia.
In most cases the pressure is caused by an artery or vein squashing (compressing) the trigeminal nerve. These are normal blood vessels that happen to come into contact with the nerve at a particularly sensitive point.
It's not clear why this pressure can cause painful attacks in some people but not others, as not everyone with a compressed trigeminal nerve will experience pain.
It may be that, in some people, the pressure on the nerve wears away its protective outer layer (myelin sheath), which may cause pain signals to travel along the nerve. However, this does not fully explain why some people have periods without symptoms (remission), or why pain relief is immediate after a successful operation to move the blood vessels away from the nerve.
Secondary trigeminal neuralgia
Secondary trigeminal neuralgia is the term used when trigeminal neuralgia is caused by another medical condition or problem, including:
· a tumour
· a cyst – a fluid-filled sac
· arteriovenous malformation – an abnormal tangle of arteries and veins
· multiple sclerosis (MS) – a long-term condition that affects the nervous system
· facial injury
· damage caused by surgery including dental surgery
A number of treatments can offer some relief from the pain caused by trigeminal neuralgia.
Identifying triggers and avoiding them can also help.
Most people with trigeminal neuralgia will be prescribed medicine to help control their pain, although surgery may be considered for the longer term in cases where medicine is ineffective or causes too many side effects.
Avoiding triggers
The painful attacks of trigeminal neuralgia can sometimes be brought on, or made worse, by certain triggers, so it may help to avoid these triggers if possible.
For example, if your pain is triggered by wind, it may help to wear a scarf wrapped around your face in windy weather. A transparent dome-shaped umbrella can also protect your face from the weather.
If your pain is triggered by a draught in a room, avoid sitting near open windows or the source of air conditioning.
Avoid hot, spicy or cold food or drink if these seem to trigger your pain. Using a straw to drink warm or cold drinks may also help prevent the liquid coming into contact with painful areas of your mouth.
It's important to eat nourishing meals, so consider eating mushy foods or liquidising your meals if you're having difficulty chewing.
Certain foods seem to trigger attacks in some people, so you may want to consider avoiding things such as caffeine, citrus fruits and bananas.
Medicine
As painkillers like paracetamol are not effective in treating trigeminal neuralgia, you'll usually be prescribed an anticonvulsant – a type of medicine used to treat epilepsy – to help control your pain.
Anticonvulsants were not originally designed to treat pain, but they can help to relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to send pain messages.
They need to be taken regularly, not just when the pain attacks happen, but you can stop taking them if the episodes of pain cease and you're in remission.
Unless a GP or specialist tells you to take your medicine in a different way, it's important to increase your dosage slowly. If the pain goes into remission, you can gradually reduce the dosage over the course of a few weeks. Taking too much too soon, or stopping the medicine too quickly can cause serious problems.
At the start, the GP will probably prescribe a type of anticonvulsant called carbamazepine, although a number of alternative anticonvulsants are available if this is ineffective or unsuitable.
Carbamazepine
The anticonvulsant carbamazepine is currently the only medicine licensed to treat trigeminal neuralgia in the UK. It can be very effective initially, but may become less effective over time.
You'll usually need to take carbamazepine at a low dose once or twice a day, with the dose being gradually increased and taken up to 4 times a day until it provides satisfactory pain relief.
Carbamazepine often causes side effects, which may make it difficult for some people to take.
There are a number of specialists you may be referred to for further treatment, including neurologists specialising in headaches, neurosurgeons, and pain medicine specialists.
Surgery and procedures
If medicine does not adequately control your symptoms or is causing persistently troublesome side effects, you may be referred to a specialist to discuss the different surgical and non-surgical options available to you.
A number of procedures have been used to treat trigeminal neuralgia, so discuss the potential benefits and risks of each one with your specialist before you make a decision.
There's no guarantee that any of these procedures will work for you. However, if a procedure is successful, you will no longer need to take pain medicines unless the pain returns.
If one procedure does not work, you can try another procedure, or keep taking medicines for the short term or permanently.
So, where does Phasma fit in?
For those in search of complimentary therapies, or sometimes - those who have exhausted every other avenue of treatment, Phasma has developed a unique system for the alleviation of pain, self-management of the associated nerve receptors, breathing, relaxation and Reiki chakra energy flow.*
Phasma TN therapy lasts 2 sessions - online or in-person. It is relaxing, educational and ultimately offers a useful technique and state of mind, to help manage the condition. The system was developed in association with TN sufferers and offers the flexibility to be tailored to individual need.
Contact us for more details on how Phasma TN can help you regain control of you.
* See Hypnotic World article on this by Darren Lee Willbourne, March 2021.
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