The Beginners Guide to ITP; What to Do After You Are Diagnosed

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ITP or immune thrombocytopenia is classified as an autoimmune disorder.  This is because it is the immune system that targets and destroys your platelets in your blood.  ITP is diagnosed by a low platelet count after the exclusion of all other causes for this deficiency.

So you have just been diagnosed with ITP.  Firstly, welcome and don’t worry.  Having ITP is not going to ruin your life.  This article is going to walk you through the first steps you should take after your diagnosis.

It will be easy and you can learn from our mistakes.

1. Start Tracking Your Platelet Count Now

Keeping a close eye on the rise and fall of your platelet count is key to removing a lot of the FEAR and worry from ITP.  Over a long period of time, patterns will begin to emerge and you will start to connect platelet drops with other environmental factors. Continue reading

H. Pylori and Chronic ITP

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Comments about people with ITP and H. PYLORI infections are popping up all over the place.  HEREHERE & HERE.  In each case, people with ITP have seen an increase in their platelet counts after being treated for a Helicobacter Pylori infection.

What is a Helicobacter Pylori infection?

H.Pylori is a gut infection.  It is difficult to discover and treat, as H. Pylori burrow into the digestive mucosal lining and hide itself.  For the immune system to attack an infection of H. Pylori, the immune system needs to start destroying your stomach lining to get to it.  Grose hey?  This causes the immune system to be chronically active and overworked.  Perhaps the first step in a chain reaction that can cause the immune system to target the body.

What are the symptoms of H.Pylori infection?  Most people will have no symptoms at all.  A few patients may eventually present with a peptic ulcer.  An even smaller amount of patients with H. Pylori may end up with stomach Cancer.  Others may simply have indigestion, bloating or other symptoms of stomach inflammation.  Or no symptoms at all.

How does it cause ITP?  

There is no established mechanism to EXPLAIN HOW H. Pylori could be implicated in the development of an immune-mediated platelet killing spree.  While it is still unknown why or how it works, a connection was found.

Only very recently RESEARCHERS found that there was a link with H. Pylori and ITP.  The World Journal of Gastroenterology June 2014 and other studies found that the platelet counts markedly improved when patients were treated for H. pylori.  Medical treatment for ITP ranges from watchful waiting, immunoglobulin IV treatments to spleen removal.

Although the evidence and follow-up are limited, it appears reasonable to routinely screen patients with ITP for H Pylori, particularly in those populations with a high background prevalence of H Pylori infection.

Here is the thing.  By definition, ITP is caused by your immune system, without cause.  If you have Primary ITP, then the idea is that there is no reason you have a low platelet count.  But if you were to eventually discover the cause of your ITP, then it would become secondary ITP.  And then there are steps you can take to heal yourself.  Yay!  (I want that kind)

Eradicating a H.Pylori infection?

pylori 2Firstly you need to get tested for H.Pylori with your doctor.  If it turns out you do have a H.Pylori infection, that is wonderful news.  There are many things you can do to solve it.  Primarily there is a strong antibiotic you can take.

ERADICATION THERAPY is simple and inexpensive, with limited toxicity and the advantage of avoiding long-term immunosuppressive treatment.  But there are also gentler, long-term treatments that are natural and also successful.  Here are two ways to heal from H.Pylori NATURALLY.

In Conclusion…

While we cannot ascribe to all cases of chronic ITP to a H pylori infection, the EVIDENCE IS STRONG enough that H Pylori eradication should be mentioned on websites that discuss chronic ITP.   This information certainly opens up the door to a number of different management plans for ITP.

It might be just me, but every time I read something like this, I can feel pains in my stomach from just the thought of weird bacteria burrowing into my epithelium.  I’m going to get myself tested this week!

Tammy Farrow

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Welcome to Tammy's Story

My name is Tammy Farrow.  I am 32 and live in a small village near Bath, England. I married John, my partner of 10 years in July 2012 and we have 3 children, Johnnie, Marylou and Blossom. I am a stay at home mum, spending my days looking after the children and keeping the house organised (sort of).

I am a self-taught hand lettering artist and illustrator, and have just opened an ONLINE STORE to sell my creations – this is something I really enjoy and spend as much time doing as I can – I have found it especially therapeutic since I have been ill.

My ITP story starts in January 2015. I had been feeling a little under the weather since Christmas, all three children had had a cold/flu virus over Christmas and New Year but I hadn’t properly come down with it, I just felt a bit ‘off’. I remember praising my immune system for battling it off, little did I know…

By mid January I started to notice that I had bruises I couldn’t explain, two or three on my arms, and four or five good sized ones on my legs, then I had some huge mouth ulcers (which wasn’t that unusual for me if I had a virus) but accompanied by lots of dark red dots all over the inside of my mouth – this I had never had before. I assumed I had some kind of nasty mouth infection and made a doctors appointment.

The day before my doctors appointment I plucked up the energy to go for a run, I hadn’t run much since Christmas because I hadn’t felt 100% and I was feeling guilty.  I’m not the world’s greatest runner, but I could make a 5k with relative ease, however on this day, I had to pause 3 times before reaching 1.5k. I knew something wasn’t right, I tried again to power on, then I started getting red flashes in front of my eyes as I was running. I decided to turn around and go home, I still managed to do walk/run intervals home though – I was determined not to give up entirely! I spent the rest of the day completely drained. I googled unexplained bruises for the first time. Big mistake.

At my doctors appointment the next day, I told him about my bruises and showed him my arms – he didn’t even ask to see my legs, he said we would need a blood test straight away. Alarm bells rang. I asked him if I needed to make an appointment with a nurse for this (standard practice at my surgery normally) but he said he would do it himself there and then and he would have the results back my late afternoon. Gigantic alarm bells rang. I spent the rest of the day in a minor panic, trying to resist further Googling of my symptoms.

Tammy Farrow, Bruise, bruising, itp, itp bruises, bruising easily, hide a bruise, bruises, bruises cover up, makeup bruises, low platelet count bruise, My doctor called late afternoon as promised, this is when the real panic began. He explained that my platelet count was abnormal at a count of 23,000 and that I would need to go to the hospital as soon as I could. As I had no ‘wet bleeding’ it could wait until first thing in the morning. My doctor hand delivered a letter to me later that evening, to take with me to the hospital in the morning. We organised childcare for the next day and spent the night very worried and shocked, with no real idea what was going to happen next.

We went to the hospital the next day, I had lots of blood tests and answered what felt like a million questions. We spent most of the next week or so completely terrified, trying desperately to be optimistic and keep some kind of normality at home in between all the appointments and phone calls. One by one over the next few days and weeks we ruled out the more scary things we’d found during our google investigations – Leukemia, Lymphoma, Hepatitis, TTP, etc.

Then came my official diagnosis, Immune Thrombocytopenia.
We were relieved that it wasn’t something terminal, or something that required immediate emergency treatment. By this point, it was February and my platelets had crept up to 63,000 and dropped back down to 24,000. My doctors were happy to let me stay unmedicated as long as I didn’t drop below 20,000.

And so the weekly blood tests and constant monitoring began. Not for long though – within a few weeks a routine blood test showed that my platelets had dropped to 4,000.

I had brought the blood test forward a few days as I had been ill with a cold virus and had noticed bruising and petechiae. An on-call doctor called at 10pm that night to tell me how low my platelets were and that I needed urgent medical attention. Again, as I had no wet bleeding it could wait until the morning.

I went to my local hospital the next day and was given a high dosage of PREDNISOLONE – the thing I had been fearing since diagnosis. I had spent the previous 8 months losing over 2 stone in weight – the last thing I wanted was steroids. But in this instance, it was a case of health above vanity, and as the doctor reminded me, this was a medical emergency.

So, I have been living with learning how to accept this chronic illness into my life, trying not to hate it, watching for symptoms, reducing the steroids, deciding on second line treatment, trying to live a normal life when everything seems to be different now somehow.

We constantly analyse any change in my platelet count, but never seem to find any pattern – it is wise to expect the unexpected we have found, and yet we continue to analyse.

Stress and fatigue plague me. I can’t work out if that is the ITP itself or the reducing steroid therapy – time will tell I guess. I seem to use all of my energy trying not to be angry with everything and continuing to function as a useful human. By the evening, I am exhausted. I worry that my family suffer as I know I am not the wife and mother I was before all this began.
John is my constant support and reassurance that I am not completely unbearable. I think he is an excellent and endearing liar.

I try to exercise often, I don’t run as often as I used to – my joints ache from the steroids. I have taken to trail running more now the summer is here as it is softer under foot and less impact on my joints. I watch what I eat as much as I can, lots of nutrient rich foods and no alcohol. I gave up smoking years ago.

I sleep okay (as well as my children allow) I am still a light sleeper, but I find mornings hard. I wake up very tired and grumpy most of the time which is not a nice way for any of us to start the day. I do feel now I have recognised it, I can snap out of it quicker.

My mood can change from one minute to the next, which is hard to live with. I have always been very level headed, so being moody and overly emotional is alien to me. I am forgetful and scatterbrained which is also new to me – I’m learning to live with it.

I wear a MEDICAL ALERT bracelet. It makes me feel safer, especially as I am responsible for children.  I feel it is my responsibility to be as safe as I can be.

I am still new to ITP and still learning how to live with it. I haven’t fully accepted it into my life yet. I’m not sure I ever will. I am slowly accepting that it affects everything and won’t be ignored. I’m not sure how I will ever get used to that.

Socialising is hard, I don’t drink anymore which is one factor, but especially at the moment as I reduce the steroids and cortisol is lacking, I find social situations difficult, I’d like to hide under the duvet most days.

Tammy Farrow, Bruise, bruising, itp, itp bruises, bruising easily, hide a bruise, bruises, bruises cover up, makeup bruises, low platelet count bruise, But life goes on, my children and my family keep me going – my family and friends are amazing support and I am very lucky to live in a country with a fantastic national health service who are looking after me excellently.

I am hopeful for the future, I hope that this illness will take a back seat once we have learned how to cope with it properly. I hope that my children grow up understanding that Mummy has ‘silly blood’ but don’t grow up remembering Mummy being ill. I hope that ITP helps me to continue looking at the world through the eyes of someone who doesn’t take anything for granted.

You can contribute your story HERE – We would love to hear from you. 

 

 

What Your Blood Type Says About You; O-Baby!

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Have you heard of the EAT RIGHT FOR YOUR TYPE  blood type diet?  I am a Type O. I have heard a few people talking about the Eat Right For Your Type diet over the years.  My sister in law and mother have had huge success with it.  When researching my blood type I was struck by the fact that it was recommended that I eat paleo and do high-intensity physical exercise.  These are the things I have naturally been drawn to without knowing it.

After a little online reading, I discovered that TYPE O have one of the toughest digestive systems out there.  We also have the most overactive immune systems of all the blood types.  That type O respond best to stressful situations with intense physical exercise and feel great after vigorous workouts.  Which might explain why I love pushing myself in Ballet class.

There are many people who believe that your blood type says about as much about you as your star sign (As in…Nothing!).  Well, I believe.  I am a Pisces and fit the description perfectly.

The EAT RIGHT FOR YOUR TYPE diet was released in 1996 by Peter J.D’Adamo.  It was also rereleased in 2004 as a new edition.  Each edition of the book received a lot of criticism from the scientific community.  In the book Peter J. D’Adamo described ongoing clinical trials; however no clinical trial results have been published.

So I am approaching this ‘science’ with the same enthralled mysticism I bring to Personality tests, star signs and Chinese birth years; with one hundred percent interest.  According to the book…

TYPE O (Me)

People with type O blood are most suited to an animal protein diet and intense physical exercises such as jogging or aerobics.  People with O blood type may be more likely to have depression and intense anxiety.  Typical of blood disorders.

TYPE A

People with a type A blood are most suited to a vegetarian diet and calming physical exercises such as yoga or tai chi.  You know those people who are vegetarians and love yoga and are always trying to get you to do Tai Chi?  Chances are they might have Type A blood.  People with A blood type may be more prone to getting an obsessive-compulsive disorder.  Children may be at a greater risk of having attention-deficit disorder.

TYPE B

People with a type B blood are able to enjoy the widest variety of foods as they have a very tolerant digestive track.  They should focus on moderate physical exercises such as cycling or swimming.  Children with B blood type may have a lower risk of being diagnosed with attention-deficit disorder.

TYPE AB

People with a type AB blood are people with the fewest problems with allergies and digestive problems.  People with AB blood need not panic about their future cognitive wherewithal, who’s brains are apt to benefit from a healthy diet and regular exercise for the body and brain.

Sounds Crazy?

This might all sound about as crazy to you as the Bura-Hara Blood Group Harassment movement in Japan.  If it does never mind.  But if there is something here that makes a little sense to you, let me know.

Further Reading

The BEST WORKOUT For Your Blood Type, from Prevention

Blood Type MATTERS FOR BRAIN HEALTH, from Scientific American

BLOOD TYPE DIET from Body Electric

Blood type INDICATOR OF HEALTH

The BLOOD TYPE WORKOUT

 

An Interview with Miss Plaquetas (Miss Platelets)

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Laura Cisneros is an ITP patient living with Fybromyalgia and Chronic Fatigue Syndrome in Mexico City.  Online she blogs as Miss Plaquetas, writing a bilingual blog about chronic illness and cooking delicious food.  I first saw Miss Plaquetas on Instagram when she was sharing images of bruises under the hashtag #platelets.  Lately we have been chatting.

I’ve lived with ITP for the past three years now.  March the 1st of 2012 I had a fall that wasn’t even tough, but that caused a huge black bruise on my leg.

It was her friends, family and bosses at work that noticed Laura’s symptoms.  Her family were concerned; especially as she looked very worn and felt she was under a lot of stress.

By then I already had symptoms of the disease, although I didn’t know it was ITP.  I ignored these signals which I believed were caused by the stress to which I was subjected.  I traveled a lot for my job and was addicted to my work.

At the time Laura was working in Industrial Engineering specialising in Hygiene and Industrial Safety which saw her constantly traveling.

I always put my job as my priority and on weekends I was partying a lot, so it was natural for me to assume that my body was already getting tired. Sometimes I would get a message the night before that I had to go on a trip,and I should be ready for at least, fifteen days of absence.  I never thought it was something else.

Laura was eventually sent to the ER with a count of 12, not understanding what was happening and not sure how to explain anything to her parents.

Three years may not sound very long, but I’ve been subjected to a myriad of treatment with immunosuppressants, steroids, alkali, intravenous, oral, mixtures…Two splenectomies, one of the spleen and one in accessory spleen and tumours.

Laura’s longest stay in hospital so far has been two months.  Her doctors have tried all possible treatments and none have worked successfully.  The journey has taking quite a toll; mentally, personally and spiritually.  There have been exhausting times when Laura even considered simply giving up.

Due to constant fatigue, eventually I got more diagnosis of fibromyalgia and CFS, which coincided with my chronic ITP diagnosis in November 2014.  It took two years that a rheumatologist diagnosed me with fibromyalgia and CFS.

Continue reading

The Questions I get Asked the Most.

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1. I am so confused!  Can you Help me?

I hope so, but not always.  Almost every email I receive begins with this sentence or something very similar to it.  I am not a doctor and I have not ‘cured’ my own ITP by drinking kombucha tea.  Chances are I probably can’t ‘help’ you in any physical sense.

But I would love to make you feel better and help to ease your mind about ITP.  My aim is to promote a more positive frame of mind, remove a lot of the fear and misunderstanding from ITP, help you to take practical steps to regain control of your life and hopefully make you laugh.

2. Can I still exercise and go to the gym?

The best way to answer this is to again speak from my own experience.  I exercise a lot.  I don’t go to the gym because I prefer to walk and dance.  If I was a gym person I would defiantly still go.  I prefer to walk, ride my bike around town and go to dance classes.  I do about 6 hours of ballet a week (I know what you’re thinking, she’s probably pretty good! But sadly no, I am still terrible).

But let me be clear.  This exercise is hard.  It hurts and I can feel it the next day.  I am sore and my muscles always ache.  It is not easy for me, but I try not to be discouraged or scared by how differently my body responds to exercise.  If I have a very bad run of low platelets and terrible side effects, I return to dancing via a few weeks of yoga first.

3. How long will it last?

There is no way to know how long your ITP will hang around for.  Generally vaccine induced ITP is acute and will be in remission after six months.  Other than that, there is no way to really know.

4. Will I give ITP to my kids?

In short, no.  While there is no scientific evidence that parents with ITP will have children with ITP, it has HAPPENED BEFORE.  There is a fine line between nature and nurture.  Babies born to ITP mothers may have a low platelet count shortly after their birth.  This is because they are still processing and recovering from antibodies in their mothers’ blood.

5. Have you ever had Rituxumab?

No. I personally have not had Rituximab.  I do have a number of friends that have taken it and have seen my mother go through two courses of the drug.  If you are looking for more information on Rituximab, I recommend you read THIS article.

6. Which treatments have you had?

I consider myself very lucky with the treatments I have had for ITP.  I have a prednisone responsive immune system and am able to mostly treat my ITP through steroids (though they have their own problems, I know).

7. Which Diet / Nutritional Philosophy do you follow?

I eat a very relaxed combination of the PALEO diet and the EAT RIGHT FOR YOUR TYPE diet.  My blood type is O.  Type O people are recommended to have a protein heavy diet, which is what I naturally crave.  So when I tell people that paleo really works for me, I need to be clear that it also fits well with my blood type.

When I say I am relaxed about what I eat, I mean that I don’t let my diet interfere with social occasions or refuse loving home made food.  I eat whole foods made from scratch.  My indulgence is cold press pear cidar and shoe string fries.

There is More Than One ITP Convention? It’s True!

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Held in the UK and presented by the ITP Support Association UK, the ITP NATIONAL CONVENTION was held on Saturday the 11th of April in Lancs, 2015.  Yes, sadly you probably missed it.

The great news is that the PRESENTATIONS from the convention are available online to check out.  Katie from Me Myself and ITP was there to give us the LOW DOWN on the Convention and share her insights from the day.

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The ITP Conference 2015

Held in the America, the Platelet Disorder Support Association’s ITP CONFERENCE will be from the 24th to the 26th of July in Nashville Tennessee.  The THREE DAY PROGRAM has already been finalised and is available on the Platelet Disorder Support Association website.

The program features renowned ITP authors, researchers and clinicians, all with a strong interest in helping ITP patients improve their health.  In addition to the educational programs and social events, there will be a programs for children and teens ages 5 and up.