#itpaware

[anthonypaulh]

MANCHESTER in MAY

Our Annual Convention draws closer by the day

All our focus is on Manchester

We can’t wait for the

Tenth of May 

We can’t offer Northern Soul, 

The Hollies or New Order

But we absolutely guarantee

Your knowledge will be broader

We’ll look at all the topics 

That trouble us all so much

From fatigue to the latest treatments

And our quality of life as such

We don’t have many tickets left

If you want to come along

So to book your places, click on the link

To join our merry throng

The venue itself is splendid

The World famous Bridgewater Hall

We’ll even throw in some lunch

We’d love to see you all

I’ll be going along myself

So I hope to see you there

I urge you to come if you can

And our stories we might share

Until then Platelets up 

Stay healthy, fit and well

Remain positive and upbeat

Don’t let negativity dwell

Anthony Paul Heard

28th March 2025

[vikashkumar7544]

🩸 Understanding ITP: The Silent Bleeding Disorder

Immune Thrombocytopenia (ITP) is a rare autoimmune disorder where the immune system attacks platelets, leading to bleeding complications. Our latest article delves into its causes, symptoms, and treatment options.

Read more: https://revisiontown.com/idiopathic-thrombocytopenic-purpura-itp-causes-symptoms-treatment/

[pz-doodlez]

Something I’ve been working these days. This is a detail of a very big illustration I’ll use as a banner for my table @geeknationbrasil :) Some people are asking me about my health, so, here is some feedback on that! If you don’t like sad stuff, skip the next part. Since my platelet number got higher at the hospital, I was discharged from there and soon I went to my doctor’s office for an appointment. He said this increasing number may be because my body had a vert late response to the steroids. He said I’d need to keep checking the blood exams every week until next appointment to monitor my platelet levels. Then, Monday I had this new appointment and the platelet values kept rising, so now I’m at a healthy value (152.000). With this value we finally can star tampering the steroids yay! For now I’ll be taking a smaller dose each 10 days and keep checking my blood exams every 15 days, until I arrive at 20mg dose. Then we’ll fractionate this dose at another pace. If everything goes right, I can be out of medication and just keep an eye on the platelet levels more often! If the levels decrease, I may have to start another line of treatment. Because the new coronavirus is spreading fast and I’m in the group risk (asthma, immunosuppressants, steroids), I’m raking the quarantine time very serious. Still I’m very very happy about the steroid tampering /0/ Wish me luck! Paula If you like my work, please consider supporting me at Patreon: https://www.patreon.com/paulazanotelli Se você gosta do meu trabalho, por favor, considere me apoiar no Apoia.se: https://apoia.se/paulazanotelli #update #illness #itpawareness #pti #art #arte #illustration #ilustracao #pulapula #pula #bunny #rabbit #coelho https://www.instagram.com/p/B-LEMqSD0I7/?igshid=1aipz3yo4lds8

[makaaluhh]

If y'all are curious about my life and what i do and learn more about my disease then click this link... you wont be disappointed, now I’m still new to it so bare with me.

[destroyermariko]

Sorry I've been quiet again, Hope got very sick last month, we didn't know if he was going to survive! Thankfully he's doing much better now, but will need ongoing treatment for the next few months. It was a very scary time for us! I made a video about it on my YouTube, click here to watch. Dogs are family, I'm so glad things worked out in the end. Hope you guys are all doing well too!

私の犬ホープは先月病気でした。病院に連れて行く必要がありました！怖かったですが、今はホープが元気です。犬は家族ですね。ホープがまだ生きていることがうれしいです!

#ilovemydog #dogs_of_instagram #instadogs #犬 #子犬 #puppy #dog #pup #pupper #immunemediatedthrombocytopenia #survivordog #itpawareness #vetvisit #emergencyvet #dogbloodtest #dogbandage #vetmedicine #veterinarymedicine #vetspecialist #vethospital #vethospitalisation #sickdog #sydneydogs #dogsofaustralia #maltesechihuahua #rescuedog #ワンちゃん大好き #ワンちゃん #youtubersofinstagram #destroyermariko (at Sydney, Australia) https://www.instagram.com/p/CCN-Ke6h97z/?igshid=ftbfi4scgeak

[jtmarose]

This article by Emilia Clark for @newyorkermag is honest and amazing. I figure if she can come out about this terrifying experience then I can tell my small story to the masses. I have/had a bleeding disorder since I was 15 years old. My body, at different times in my life, eats my platelets. If they get really low I have to be hospitalized for days at a time. I get to leave the hospital but then medicated for months sometimes years to get my body to even out. When I got ITP as a kid I was upset but took it in stride like kids do. There were times in my life it took me out of everyday fun like riding roller coasters at Disneyland Grad night at 17 to being benched for a year after I worked my ass off in Fresh Meat roller derby for 7 months. To big stuff this last time like 6 month of my life that I cannot remember, my hair fell out and I asked my mom to put me in a psychiatric ward because I thought I was losing my mind due to very high doses of steroids. Right now my levels are normal but I still get my blood drawn regularly. I still freak out every time I get a bruise or my nose runs for fear it’s a bloody nose. Of course there are others who have it worse but in dark times you just wonder if you’re going to survive and if you’re strong enough to get through it again. Each time I surprise myself, I become stronger and work harder to make the days count. Without my friends and family I would not be close to what I am today. #ihaveitpbutitpdoesnthaveme #thankfulforallthedays #itpawareness https://www.instagram.com/p/BvS9041Fw0E/?utm_source=ig_tumblr_share&igshid=kjorlu2q1h56

[blackbird685]

A forgotten post from last week. This file sums up everything I’ve been through the last 4 years dealing with #itp. It’s crazy how things such as numbers can instantly change your mood and make you go from having a good day to bad day in a second. It’s a never ending battle that hopefully one day I’ll overcome. Until then, this file will continue to grow and with it, hopefully growing numbers and remission. #itpsucks #itpawareness #itpcankissmyass @itpsupportassoc (at Saint Michael's Medical Center)

[anthonypaulh]

DON'T LET THE SUN GO DOWN ON ME

During the Winter and early Spring we ITP folk in the Northern hemisphere need to consider taking a Vitamin D supplement as we say goodbye to sunny days and hence the lack of natural absorption of Vitamin D from those warming rays.

For those of us living in colder climes we are all too aware of our long Winters. That miserable time between the end of September and the beginning of April when we are starved of sunshine. All our pictures seem to fade to black and white !

Here in the UK, one of our national pastimes is talking about the weather but I am sure that few people understand the implications of a lack of sunshine on our health.

It is our reduced supply of vitamin D that is impacted by the lack of sunshine that we get during the Winter months that causes us a problem. It can have potentially dangerous implications for our health.

We can synthesise vitamin D3 in our skin from sunshine and this is our main source of vitamin D. However, in the UK and anywhere in the Northerly latitudes for that matter this is only possible in the summer months,  during the hours around midday (11am-3pm), when sunshine contains sufficient UVB light (290-315 nm). 

During the winter, vitamin D can only be obtained from our diet (and supplements), but only a relatively small number of foods contain vitamin D.

So why is Vitamin D important to our health and what problems can it lead to if we do not obtain enough of it ? 

 Vitamin D is needed for maintaining the balance of calcium and phosphorus in the body, It is essential for keeping bones and muscles healthy and to facilitate the body to take in calcium and phosphorus, which are needed for healthy teeth and bones. It also assists our immune system to fight infections, support nerve function, and help maintain muscle strength to prevent falls.

A deficiency can lead to a loss of bone density which can contribute to osteoporosis and broken bones.

Severe vitamin D deficiency can also lead to other diseases. In children, it can cause rickets which is a rare disease that causes the bones to become soft and bend. In adults, severe vitamin D deficiency leads to osteomalacia which causes weak bones, bone pain, and muscle weakness.

There are surprisingly few sources of vitamin D in our food and so without the sunshine levels that we get in our Summer months we will almost certainly see our levels  become low during the Winter months, unless we take a supplement.

Good sources of vitamin D from our food are -

Oily fish – such as salmon, sardines, herring and mackerel

Red meat

Liver

Egg yolks

Fortified foods – such as some fat spreads and breakfast cereals. Check the labels !

I take a vitamin D supplement during the Winter and always have done. From October 1st until May 1st I take a 10ug vitamin D supplement tablet. This is certainly supported by Public Health England who recommend a supplement is taken during these months, when vitamin D synthesis in the skin is not possible. 

SO WHO IS AT RISK  ? - 

At risk groups, including people who do not often go outdoors, who reside in an institution such as a care home, or those who normally cover most or all of their skin when outdoors, should take a daily 10 microgram vitamin D supplement throughout the year.

 People with dark skin, including individuals from Black and Minority Ethnic (BAME) groups (e.g. individuals of African, African-Caribbean or South Asian background), should consider taking a vitamin D supplement all year round, as they may not be able to get enough vitamin D from sunlight exposure during spring and summer. 

So there we have it, when there is no sunshine because of our rainy or Winter days, we need to do something to boost our vitamin D levels. Taking a supplement of 10ug per day should be sufficient for most of us during the Winter months. This should make up for the lack of the vital vitamin D we can obtain form the sunshine we might get during the Summer. Eating a sensibly, balanced diet will also help too.

Some useful sources of information on Vitamin D  - 

[pz-doodlez]

I achieved 1.5K followers on Instagram!!! Time to do another giveaway:) This giveaway will be a full color illustration of a theme the winner chooses (kinda like a free commission). This is your chance to get something made by me, personally for you ;) The illustration can be either digital or traditional in watercolors or copics. If you chose traditional media I'll send it to you through mail and you'll also receive a scan of the work, also the size will be limited to A5. To participate, follow my page @paulazanotelli, like this post and tag 2 friends in the comments! I'll draw the winner next monday, 03/15! Good luck! And thanks for your amazing support! If you like my work, please consider supporting me at Patreon: https://www.patreon.com/paulazanotelli Se você gosta do meu trabalho, por favor, considere me apoiar no Apoia.se: https://apoia.se/paulazanotelli #update #illness #itpawareness #pti #art #arte #illustration #dog #cachorro #sketch #esboco #sketchbook https://www.instagram.com/p/B9fGsFfjyoL/?igshid=1imn0ejqr10hm

[anthonypaulh]

ITP SEPTEMBER AWARENESS CAMPAIGN

The 2024 Global ITP September Awareness Campaign is suddenly upon us again, running from September 23rd to the 29th 

Here’s why it is so important and why we should get involved. 

WHY IS ITP SEPTEMBER AWARENESS  IMPORTANT ?

One of the many things that I have taken from my 18 year ITP journey is that we need to make more people aware of this rare illness. Like most ITP sufferers, before I was diagnosed I had never heard of it. 

After my diagnosis, I couldn’t believe I had anything as serious as ITP. I thought the hospital had made a mistake. Possibly they had confused my blood test results with somebody else ! 

I frequently asked myself - Why me, how can I have ITP ? I have never been ill before, never smoked, never taken any drugs and always drank alcohol in moderation. 

Well, so what ? ITP does not care who it chooses and when. It can develop in anyone at anytime at any age and of any ethnicity, although we do know that it occurs more in women than men. In short, ITP is not terribly fussy, we are all fair game. 

In adults it is usually more stubborn than in children. It tends to disappear (often without treatment) in many children, as suddenly as it turns up. In adults it is rarer to see it go into spontaneous remission. But we can still live very full and positive lives.

SPREADING AWARENESS  GETS RESULTS 

There are plenty of grounds for optimism and it is clear that our ITP Awareness campaigns have borne fruit. When the annual September campaign started back in 2010 things on the purple front were very different.

Looking back to 2006 and my diagnosis there were far fewer treatments available for ITP (For example - TPO drugs had not been rolled out) few support groups, and limited numbers of blogs, social media groups, vlogs, let alone research on the scale we have now. 

Until the TPO drugs were introduced the only treatments for ITP were not designed to treat ITP. All of the options were  borrowed from other illnesses/conditions. Now we have the TPO drugs specifically developed for the treatment of our condition. 

So things have improved dramatically and as evidence of this I would urge anyone living with ITP to watch the many video films on the ITP Support Association You Tube Channel which explain the many treatments now available. 

Also on the channel are the presentations made at the Annual Convention from May 2024 so you can view the most up to date developments in ITP from some of the leading Global experts.

The whole approach to ITP is so much more positive, more patient focused and inclusive. It is far more optimistic and encouraging.

Making an effort to spread awareness has undoubtedly played a big part in moving research, treatments & knowledge further forward. 

There is no better reason to get involved this September than knowing any contribution we make is improving things for us living with ITP now, and helping those who may follow us in the years ahead.

However, we cannot be complacent, it is up to us to keep making others aware of our condition. We know what it is like to live with it and we can tell others what to expect. If we don’t inform people, then who will ? 

So please join in the September Awareness campaign, try to get involved even if it is to take just one or two small actions. 

ITP September Awareness week runs from September 23rd to the 29th 

USEFUL LINKS - 

GLOBAL ITP AWARENESS WEEK - 

ITP SUPPORT ASSOCIATION - YOU TUBE CHANNEL -

PLATELET DISORDER SUPPORT ASSOCIATION - 

ITP AUSTRALIA and NEW ZEALAND -

[anthonypaulh]

CAUGHT NAPPING - ITP and FATIGUE

CAUGHT NAPPING - ITP and FATIGUE 

Fatigue is the one subject which most often comes up on our social media platforms, online support group meetings and at our annual convention.

It is a key symptom of and is present in ITP but it is less easily recognised because there is no physical evidence to explain it and no simple way to measure it. We also know that excessive anxiety and stress can be triggers for fatigue. 

So what can we do about it ?

There are many things that we can do to help combat fatigue. That said, not all of the following things will result is a completely fatigue free life if you do them. Many of these suggestions will be effective for one person but may not work as well for others.

 After 18 years of living with ITP here are a few ideas. These things all play a part in my daily routine and seem to help me.

At the end of the article I have included some useful links to sources that I use. I hope they help.

BUT I emphasise that - 

It is important to discuss your own individual medical situation with your specialist first before making any changes to your routines/diet/exercise etc.

SLEEP

1. Go to bed and get up at a regular time if you can. Try to follow the same sleep routine every night. Good sleep is vital allowing our bodies to rest and repair.

2. Do some mental and physical exercise during the day, especially late afternoon or early evening as it should help you sleep.

3. Only take a short afternoon nap if it doesn’t interfere with your sleep at night. 

4. Avoid dozing in front of the TV in the evening. Instead try reading, listening to music, or writing. In the evening don’t overuse computers, tablets, mobile phones or over engage with social media. These things over stimulate the brain and prevent our systems from winding down towards day’s end.

5. Keep your bedroom dark (seems obvious but always close the curtains or blinds). 

6. Make sure noises in the house during the night are minimised. Switch off electrical appliances that hum, buzz or disturb you. Turn off TV’s, mobile phones, lap tops, iPads well before you go to bed. 

7. Make sure your bedroom is not too hot.

8. Have a warm, milky drink before you go to bed. Avoid anything with caffeine . Don’t eat anything heavy for a couple of hours before you go to bed and avoid too much alcohol.

9. Try to keep calm if you really cannot sleep. 

      10. If you are going to be awake don’t keep tossing and turning, get up and read for a while or listen to some music using headphones of course, then go back to bed and try to drop off.

 EATING HEALTHILY

1. Eat a good, fresh, well balanced diet. It gives your body the best chance to fight fatigue. It also helps your body in many other ways too.

2. It is important to eat a good mix of protein, carbohydrates, fresh fruit and vegetables. We are all different and may have other medical issues in addition to our ITP. It is important to discuss your diet and any changes you might make with your doctor or specialist. 

3. With ITP we must avoid quinine and any products that contain quinine. We also need to avoid aspirin, ibuprofen and any products that contain them.

4. Eat less salt, reduce fat and sugar intake. With ready made meals check carefully the levels of salt, fats and sugars included as they can be surprisingly high. Eat less ultra processed food, ready meals and fast foods.

5. Drink plenty of water. Dehydration causes many health problems including kidney stones, kidney infections, urinary tract infections. Dehydration makes you feel lethargic, tired, fatigued.The NHS suggested intake of water per day is between 6 and 8 glasses. During hot weather we should drink more.

6. Avoid too much caffeine. It is in many drinks, not just coffee & tea. It is in cola for example. Caffeine keeps you awake and also prompts you to urinate more so dehydrates you. It is also a stimulant and increases the heart rate amongst other things. 

7. Being overweight increases fatigue and has other health risks like developing heart disease and cancer. Avoid snacking and too much sugar. Reduce fats and processed food like ready meals, take away foods like  burgers, pizza, fried chicken. Eat more fresh fruit and vegetables .

8. Cook your own meals. In preparing and cooking your own food YOU know what is going into it. YOU control the amount of fats, sugars, salts that you are eating by measuring how much of it you add to your food.

9. Greens….For us ITP folk  green vegetables and fruits are very helpful. Consuming spinach, kale, cabbage, lettuce, broccoli, apples and pears are very helpful in boosting the health of our immune system. Greens contain plenty of Vitamins A, C, E, and K. (they help in the clotting process).

REDUCING STRESS

1. In the modern world, it is virtually impossible to eliminate all stress. We do actually need a some stress to function properly.  BUT it is being able to control, manage and limit stress levels that helps determine how well we live and how healthy we are. 

2. Include some relaxation every day. Try to go out and walk every day as it is a really good way to wind down. Getting some fresh air is so beneficial, it clears the mind and helps our physical well being. It helps joints and muscles, and has many other benefits. 

3. Take time every day for YOU. Listen to radio, music, read, have a warm bath,  talk to family and friends, go to the movies, take up a hobby, go to a museum, visit a gallery. Do some meditation and/or breathing exercises. DO SOMETHING ! 

4. Turn OFF PHONES, computers, iPads, gadgets, tablets. Have some down time. Be unavailable for at least a while every day. NOTHING is more important than YOUR peace of mind and long term health. The World can wait occasionally.  

5. Pace yourself, be realistic about goals you set (Try the SPOON THEORY (see links at the end of the article).

6. Stay in regular contact with family and friends and share your feelings with them. Fatigue and stress are invisible to others so talk to someone about it. Use the many ITP social media based forums/support groups and share your experiences.

7. Avoid stressful situations. It sounds ridiculous but sometimes the smallest word is one that is the most difficult to use. The word is NO. Sometimes for your own good say NO.

8. Along with saying NO, keep a planner. Make sure people around you know what that planner consists of. Don’t allow people to double book you or steel your time. Be clear what you want to do and when. YOU have to MANAGE it or it will MANAGE YOU. 

9. Plan properly. The old adage of “failing to plan and planning to fail” is the truest of them all.  Plan well and know what success is, know what you are aiming to do, when you are aiming to do it by, how you are going to do it.  (ie set SMART GOALS).

           10. Don’t be afraid to ASK for help. So many people take everything on themselves and forget that a problem aired is a problem shared.

           11. Tell your doctor, ITP specialist, consultant if you are feeling stressed, fatigued, tired. You would tell them if you have a nosebleed or bruise so tell them about stress, fatigue and tiredness. 

12. Join in with ITP local group meetings and social media forums. The ITP Support Association  have regular local and national meetings and platforms on Facebook, You Tube, Twitter and there is also the ITP Support Association HealthUnlocked group.

13. Get a little bit of sun. It is essential for supplying our Vitamin D requirements. Not getting enough sunlight can exacerbate fatigue and feelings of tiredness. Obviously too much sun has other negative effects but a little exposure to the sun is useful.

EXERCISE

1. Many studies confirm that exercise boosts energy levels. It improves the efficiency of your heart, circulatory system, lungs and muscles and is good for the brain. It aids flexibility and helps prevent obesity and the negative health issues that may arise from it.

2. You don’t need to do too much. We are all different in what we can do . Be sensible, start slowly and discuss any plans you have to start exercising with your doctor or specialist first

.

3. Regular light exercise is proven to be beneficial to combating fatigue. Just a short walk every day is a great start, especially in nature.

4. Cycling and swimming are great alternatives to walking or jogging.

5. Don’t sit too long. Even if you move around in the garden cutting the grass, picking up leaves, just pottering around, it is all helpful.

6.     Getting some fresh air & it will help to relieve stress, improve your sleep and reduce tiredness. 

Many of these suggestions are common sense and probably things we all think that we are already doing.  The most important thing is that it should not become too onerous because if it is then you will not stick to it. You have to make it fun, simple and really want to do it.

Good luck and best wishes

Anthony Heard 12/8/2024

USEFUL LINKS

THE SPOON THEORY - 

https://www.gwh.nhs.uk/media/rk2krmbw/fatiguemindmaptrifold1604.pdf

WATER, DRINKS and HYDRATION -

NHS EATWELL GUIDE - 

NHS - EVERY MIND MATTERS - How to recognise and cope better with Stress-

FOOD FOR LIFE - Book by Tim Spector

INSIGHT TIMER - BREATHING , MEDITATION, MINDFULNESS -

SMILING MIND - BREATHING, MINDFULNESS -

BALANCE - BREATHING, MEDITATION, IMPROVING SLEEP -

GROW MODEL for SMART GOAL SETTING - 

ITP SUPPORT ASSOCIATION YOU TUBE CHANNEL - numerous videos on Fatigue -

FUTURE LEARN via THE OPEN UNIVERSITY - numerous FREE online short courses on many subjects including NUTRITION and HEALTH -

[anthonypaulh]

A DATE for YOUR DIARIES  JANUARY 11th 2024 - THE IMPORTANCE of KEEPING IT LOCAL 

I thought that it would be useful to remind everyone with any interest in ITP of the importance of keeping it local.

We at the ITP Support Association have been holding regular local support group meetings online via ZOOM for quite some while now and especially more so since the outbreak of Covid - 19. 

These meetings have been really well received and attended with many of the regular ITP topics discussed. Anyone with any interest in ITP may join us but you must pre-register for the event.

Patient queries are answered by a member of the ITP Support Association medical panel who kindly afford us their time for these events. 

The link below will take you to the full list of our medical panel - https://itpsupport.org.uk/medical-advisors/ 

For anyone who wishes to attend the next local support group meeting it will be held on January 11th 2024 . On the evening we will have Dr Will Lester on hand to answer patient questions and concerns.

Having medical experts available, is of course such a wonderful benefit but in addition the local support groups give us all a chance to share our own experiences and concerns with each other. 

Being able to hear what other ITP patients have experienced on their own journeys gives us all an insight into things that we might not ourselves have come across and it also often acts as a reassurance that we are not alone in having this enigmatic illness to deal with. 

If you have not attended any of our online support groups I would highly recommend that you give one a try. You can get to see all of our previous such meetings on our You Tube channel at the following link - 

A huge thank you to all of our medical experts for giving us their time so freely and also to Mervyn Morgan CEO of the ITP Support Association for hosting and organising plus to Derek Elston Trustee and Rhonda Anderson ITP Patient Mentor for sharing their ITP experiences.

[anthonypaulh]

THE CURIOUS CASE of CLUMPING PLATELETS

In January 2015, I encountered yet another blast of an ITP storm in the form of CLUMPING PLATELETS. Until this strange and unexpected element hit me I had never heard of it before. Like ITP itself it knocked me off course until I managed to get it explained to me. 

The first time I heard the phrase clumping platelets, was on January 26th 2015 following my routine blood test on January 15th. I got a telephone call from the hospital advising me that the blood test I'd had was inconclusive. They couldn't actually get a definite platelet count from it because my platelets (God love them) had clumped. 

This was a complete bolt from the blue and it took the wind out of my sails a bit. Clumping platelets are actually quite common and to the health professionals they are easy to understand. But to us ordinary folk it is disconcerting and almost incomprehensible until we get it explained in plain language. I suppose that is the case with so much about ITP and indeed many illnesses. 

So in a slightly apprehensive mood, I returned to the hospital on January 28th to get another blood test, hoping that this time I would not clump. On arrival the senior nurse explained that platelet clumping is quite common, albeit in my own case I'd never had it before in my 9 purple years . 

The nurse reassured me that although my blood test of January 15th did not return a conclusive platelet count, my specialist had analysed the blood sample manually and estimated that my count was over 100. So to an extent that settled my anxiety somewhat, as clearly I was safe for the time being. But nonetheless I was curious about this clumping thing. 

My curiosity grew further when the blood test that I had on January 28th was also inconclusive, as my platelets had clumped again. Once more my specialist analysed that blood sample manually and confirmed that he could see plenty of platelets and estimated that my count was still well over 100. Exactly the same happened with yet another blood test on February 4th. Curious indeed. 

So what exactly is platelet clumping and why does it occur ? The way I understand platelet clumping is that when a blood test is done a chemical is routinely used in the test tube on the blood sample. The chemical used in most cases is EDTA ( Ethylenediamientetraacetic Acid ) . 

Sometimes, as happened in my case in January and February 2015, platelets clump in the test tube when EDTA is used. So sort of understandable but nevertheless still curious. I kept wondering why it had never happened to me before in over 9 years and probably hundreds of blood tests. I asked this very question of my specialist but he simply could not say. 

Blood samples can be tested using different chemicals to get a platelet count, so if EDTA gives an inconclusive result because of clumping other chemicals can be employed in the blood test to get a count.

So when I had yet another blood test on February 24th I had 3 samples taken. One of the samples was to be tested with EDTA, the second to be tested in Citrate (an alternative chemical ) and the third to be tested using Lithium Heparin (yet another chemical ).

The results came back completely satisfactory this time, showing a platelet count of 139 and amazingly they did not clump in the EDTA.

At a subsequent follow up blood test on March 6th, again I provided 3 samples to be tested with the 3 different chemicals as I had done on February 24th.

Once again the results were clear, the EDTA solution did not give clumping platelets and I returned a count of 125. Another blood test on April 28th using the EDTA solution gave me a platelet count of 159 and again no clumping issues. In fact the clumping platelet problem did not resurface ever again and has not been an issue for me since.

My personal view is that in January/February 2015, the laboratory carrying out the blood tests at my hospital must have been doing either 1) something different or 2) not doing something they had previously been doing or 3) they may have even doing something incorrectly compared to previous years.

It is a very strange coincidence that after 9 years of ITP , numerous blood tests and check up's, I had never clumped before, and indeed apart from January/February 2015, I never clumped again.

The whole thing remains a mystery ...The Curious Case of the Clumping Platelets. Perhaps I should have got Holmes and Watson on the case !

[anthonypaulh]

GETTING my TEETH into ITP and DENTAL TREATMENT

Before my purple journey started in 2006 a routine dental appointment would usually be completely straightforward, until then I had never really given much thought to what ITP sufferers should do in respect of such matters. 

Would ITP make any difference to my dental treatment ? What should I tell my dentist about my illness, my medication, my current and future treatment ? Did he need to know ? Why did he need to know ? Could he treat me as a normal patient ? Could he treat me at all ? 

For most people the merest hint of a dental appointment usually sets the collies wobbling. For some it's the buzzing of the drill, for others it's the smell of antiseptic or the taste of the mouth wash. Whatever turns us off, dental appointments are not much fun. 

Luckily I have always had excellent treatment from my dentist. I can't say that a visit to my dentist has ever held any concerns at all. I guess I'm lucky in this respect. So a visit to my dentist as an ITP patient wouldn’t  be any different, would it ?

Well, er, yes actually, it's very different. Just to make me slightly anxious I had heard that a number of ITP patients indicated that they had great difficulty in finding a dentist who had any idea what ITP actually was. Surely things were not this bad ? It was not Victorian England where some people had wooden false teeth and some did DIY dentistry with pliers and string tied to door handles. Hard times indeed. 

The importance of getting regular dental checks is so important whether or not you have ITP but once under the purple influence it becomes even more vital. The phrase prevention rather than cure always comes to the fore when thinking about dental checks but with ITP it is absolutely imperative.

The last thing any of us with ITP needs is to have intrusive dental treatment, which is obviously going to be more difficult if we have a low or fluctuating platelet count. So by getting checked regularly and making sure we keep to good daily routines for oral hygiene, hopefully we can avoid treatment for things like fillings, gum disease and even extractions.

I knew that I had to tell my dentist that I had ITP.  I had to advise him what treatment I had received, what drugs I had been taking , what my latest platelet count was and what treatment regime I was gong to continue with. I knew all this because I had obtained a really useful leaflet from the ITP Support Association. It was very soberly entitled... Protocol for dentists treating patients with Thrombocytopenia. A protocol sounded like something the UN would have drawn up.  But nevertheless it was extremely helpful and I gave a copy to my dentist at my appointment.  

At the dental appointment, as ever, my dentist made things as easy as proverbial pie. He  is just very good at what he does. He's so professional, well informed, up to date with all the latest technology and information (He didn't even pay me to say any of that ! )  I told him that since we'd last met I'd been diagnosed with something called ITP.  Just like everyone else I’d told about my ITP, I thought he'd say something along the lines of ...... Well you don't look ill, I've never heard of it but I'm sure you'll be fine. 

What he actually said was that although he didn't have any other patients with ITP, he'd heard of it. He would treat me in a similar way to a haemophiliac, although he realised that there were many, many differences. He switched on his laptop and we looked up ITP. I'd given him my stodgily named Protocol for dentists leaflet already but he also looked up the ITP Support Association website there and then.

He took notes as I told him my purple history to date. He recorded details of my drugs...Prednisolone, Omeprazole, Alendronic Acid, Rituximab, Mycophenolate Mofetil, platelet count history, current treatment regime, name and contact details of my specialist and any other medical history of relevance.

I didn't have any other medical history apart from ITP so , that was pretty much that. Drama over, we just needed to do the dental bit. Just open wide, say cheese and hope for the best !

It may seem obvious that our dentist needs to know our platelet count. If any treatment is needed, especially an extraction, a platelet count under 50 may preclude that treatment from being carried out. 

If you are going to have any treatment it is sometimes necessary to get a blood test to check your platelet count before undergoing that treatment and with some people it may also be necessary to consult with your ITP specialist/haematologist. 

Advising our dentists of what medication we are currently taking and have taken for the last 12 months is also vital. Any drugs the dentist uses to anaesthetise us for example, may clash with any medications we have taken for our ITP or any other medical condition for that matter. 

Another problem is that should we encounter any pain following any dental interventions the only painkillers we can take are Paracetamol. ITP sufferers must avoid Aspirin or Ibuprofen. Having purple in your life gives you so many things to think about. 

For further information on all things ITP the following links are to the most reliable and up to date sources - 

The ITP Support Association - www.itpsupport.org.uk 

The Platelet Disorder Support Association - https://www.pdsa.org 

ITP Australia - https://itpaustralia.org.au/ 

[anthonypaulh]

WHERE to GET RELIABLE & UP to DATE INFORMATION on ITP

ITP SUPPORT ASSOCIATION on Platforms 1 to 7

I get a number of enquiries and requests asking where the ITP Support Association can be found & where else you can get reliable, up to date information on our enigmatic illness ITP.

So by way of a reminder you can locate the best information on the following seven platforms for the ITP Support Association. 

The main website and the place to start for all up to date & reliable ITP information - www.itpsupport.org.uk

Facebook - https://www.facebook.com/ITPSuppAssoc/ 

You Tube - with 90 ITP related videos FREE to view -  https://www.youtube.com/@ITPSAUK/videosn 

TWITTER - https://twitter.com/ITPSupportAssoc 

Instagram - https://www.instagram.com/itpsupportassoc/ 

LinkedIn - https://www.linkedin.com/groups/13990747/ 

HealthUnlocked - a platform written by those living with ITP for those living with ITP - https://healthunlocked.com/itpsupport 

And finally if you would like to become a member of the ITP Support Association with the many benefits it brings you can join at the following link - https://www.itpsupport.org.uk/index.php/en/join-us?filter_plan_ids=6,2,5,1,4,1,2,4,5,6 

As for other reliable sources the following links are also excellent - 

The Platelet Disorder Support Association - https://www.pdsa.org

ITP Australia - https://itpaustralia.org.au/ 

Rare Disease UK - https://www.raredisease.org.uk/

You can follow my other social media platforms at the following -

TWITTER -

MY PURPLE PATCH - @Patch1Purple 

ANTHONY HEARD -   @AnthonyH7 

FACEBOOK -

https://www.facebook.com/anthony.heard.7

LINKEDIn -

https://www.linkedin.com/in/anthony-heard-acib-ba-0874a4192

[anthonypaulh]

FOLLOWING MY GUT INSTINCT 

OMEPRAZOLE and the potential problems with Proton Pump Inhibitors

For many of us living with ITP one of the drugs that we may have encountered on our purple journey is Omeprazole.

Just one of a class of drugs known as Proton Pump Inhibitors (see link at the end of this article for a full list ) , Omeprazole reduces the amount of acid our stomach makes.

Unfortunately when we are prescribed Prednisolone and in my case Mycophenolate Mofetil (MMF) for our ITP it can cause other potential problems like acid reflux, indigestion, heart burn.

So Omeprazole is mainly used to help reduce the acidic effect of steroids and other drugs like MMF on the stomach. For patients started on steroids such as Prednisolone or MMF the use of Omeprazole is often advised to prevent ulcers from forming in the stomach or gut lining.

The Omeprazole dose of a 20mg tablet once a day before breakfast is the regime many of us ITP folk will be familiar with.

As previously stated Omeprazole is a type of medicine called a proton pump inhibitor (PPI). Proton pumps are enzymes in the lining of our stomach that help it make acid to digest our food.

Omeprazole prevents proton pumps working properly which reduces the amount of acid the stomach makes thus balancing out any excess acid which we may produce from Prednisolone or MMF use.

So far so good BUT - in addition to reducing stomach acid, unfortunately Proton Pump Inhibitors can also do potential harm.

Now this does not mean that they always will be damaging because we are all made differently and respond to drugs in various ways. Short term usage of the drug usually does not cause any significant issues.

The potential problems that Omeprazole and Proton Pump Inhibitors may cause  (especially if taken for long periods) are as follows-

Mal absorption of certain key Vitamins like Vitamin B12 and Vitamin B9 (Folate)

Low Magnesium levels

Gut infections

Bone fractures

Iron deficiency

Calcium deficiency

Nausea, vomiting, constipation, tummy pain

Kidney and liver problems  

For a fuller list please see the attached two links….

A.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7887997/ 

B.https://www.nhs.uk/medicines/omeprazole/side-effects-of-omeprazole/  

Now there is nothing to say that any of these issues will manifest themselves in those of us on Omeprazole (especially short term) but it is my belief that is worth knowing what the issues are and checking with our specialists how the drug may be impacting our wider health.

In my case it was back in 2020 that I had a slight fall in my Vitamin D and Vitamin B9 (Folate) count. My specialist could not instantly tell what might have caused this (it often happens because of a change in diet) but we ended up feeling that my being on Omeprazole was probably the reason why I was struggling to absorb enough of these key vitamins from my diet.

I was prescribed Vitamin D and Vitamin B9 (Folate) supplements which I still take daily even though I have not been taking Omeprazole since 2020. I now take Gaviscon if I get any signs of indigestion or acid reflux. My Vitamin D and Folate levels are well above normal now and my specialist tests them half yearly.

Just to confirm that my ITP is being controlled by Mycophenolate Mofetil which does cause acid reflux/indigestion but nowhere near as much as the Prednisolone did in my case.

So hopefully my experience back in 2020 will be helpful for others who are taking Omeprazole or any of the other Proton Pump Inhibitors (PPI’s).

A Full List of PPI drugs in the UK is available at the following link -  https://patient.info/digestive-health/indigestion-medication/proton-pump-inhibitors