#autoimmuneillnesses | Explore Tumblr Posts and Blogs

livewellclinics · 8 months

Text

There are over 150 conditions classified as autoimmune diseases and with an extensive list, about 25% of patients tend to develop concurrent ADs aside from their primary condition

0 notes

natural-healing-micro-blog · 1 year

Link

0 notes

anthonypaulh · 6 months

Text

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/

#itpaware #global4itp #itpsupportassociation #RareDiseases #RareDiseaseUK #Autoimmuneillness

0 notes

cr8tifleeme · 4 years

Text

A smile on my face does not mean I've been miraculously cured. It doesn't mean I'm not in pain. It doesn't even mean I'm not depressed. However, it does mean that everyday I get out of bed and smile at the world I show Lupus that it picked the wrong woman to start with.

#lupus #autoimmuneillnesses

10 notes · View notes

sarahannee · 5 years

Photo

Worked ~50 hours in a full costo flare — with an inflamed thoracic nerve. And a rib that’s trying to pop out and say “hi” in the middle of my sternum. 💁🏼‍♀️ I need to do less. Bring on the weekend of self-care. I’ve disrespected The Creature too much this time. 🥄 #spoonie #success #workflow #psyd #respecttheflare #autoimmune #chronicillness #survival #autoimmunedisease #autoimmuneillness #costochondritis #endometriosis #bydls #butyoudontlooksick #invisibleillness #tenacity #makeup #wakeupandmakeup #shapetapeconcealer #facetape #lookalive #fakeittillyoumakeit (at Fort Lauderdale, Florida) https://www.instagram.com/p/B3fg4y-hUgx/?igshid=1rvinu5dakfgt

1 note · View note

wahminsc · 2 years

Photo

Part of today's schedule includes meal planning and grocery shopping sometime over the weekend. Cutting back on the processed stuff for a while to see how it helps. #wfpb #for Documenting today's health stuff, so you can stop reading now. Pain was at a constant 8/10 earlier and is down 7/10 with otc meds. I am going to run out of stronger stuff very soon and hope that the doc visit next Tuesday leads to a diagnosis and accurate treatment so days like these are fewer and farther between. I may look calm, but I am screaming inside. If you have chronic issues, how long did it take for you to receive an accurate dx? I'm going on six years since the initial fibromyalgia and cfs diagnoses and have been in constant pain since 2003-2004. This is why I'm screaming. #chronicillness #invisibleillness #chronicpain #fibromyalgia #cfs #autoimmuneillness https://www.instagram.com/p/CbirL6bO4XF/?utm_medium=tumblr

#wfpb #for #chronicillness #invisibleillness #chronicpain #fibromyalgia #cfs #autoimmuneillness

0 notes

mylifewithhurley · 3 years

Text

The Lifter of My Head

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Psalm 23:4

This week, a co-worker had an extremely bad allergic reaction. Her body broke out in hives all over and she was extremely itchy and uncomfortable. She had even cried about it, out of frustration and fear. Somewhere in the middle of her describing her experience with it all, she mentioned that if she had to live the rest of her life that way, she wouldn't. I froze.

Anxiety in a man's heart weighs him down, but a good word makes him glad. Proverbs 12:25 I once read somewhere that HS is not fatal, except in cases of suicide. While I don't personally know anyone who has committed suicide as a result of not able to cope with the disease, I can totally understand not wanting to live this way. HS can be so awful. Yes, it does get THAT bad. I can understand wanting it all to end. Actually, I've been there. Maybe my co-worker didn't mean it, but I could relate to it all. All of the symptoms, all of the emotions, and sadly, even the not wanting to live part. But you, O Lord, are a shield about me, my glory, and the lifter of my head. Psalm 3:3 While I have never felt the urge to kill myself, I have had thoughts of wanting to die or be killed because I didn't want to live with the pain & shame of HS. I have thought to myself - if this is how my life is going to be, I don't want it. I have wished that a car would come out of no where and hit mine, front driver side - quick and dirty. Of course, I never told anyone I've felt this way. These are the kinds of thoughts that people keep to themselves. There's a stigma around people that have these sort of feelings and God forbid we be considered one of them, right? But we are them. It's a fact: our disease makes us susceptible to depression and wanting to die. That's okay because these thoughts and feelings can be conquered and there is a beautiful testimony to be shared at the end of it all. Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing. James 1:2-4

It may be easier said than done, but one of the most important things to remember is that you are not alone. Of course, you have family and friends that love and care for you. Sometimes, though, you just want to know there are others out there who can truly understand what it is you're feeling. There is a large online community of HS sufferers who can absolutely understand and are always there. And if that isn't enough for you, you can step outside that community and find others; those who suffer from other autoimmune diseases or struggle with depression, who you will be able to relate to also. You may even find some comfort in personal accounts and testimonies recorded in the Bible. The Bible is filled with stories of people who waited on God and were not disappointed. There's Job, who was definitely depressed after losing everything but never, ever lost his faith, and was eventually restored fully. There's the people of Israel who wandered in the wilderness for 40 years, but continued to follow the men God placed before them, before finally reaching the land that was promised to them. God made Sarah laugh with joy when he gave her a child in her old age, after for most of her life she believed and grieved that she was barren and could not have children. You are not alone. Trust God. You will not be put to shame. I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. John 16:33

We become depressed not because we have been defeated or dominated by the giant we face, but when we are overwhelmed and controlled by negative thoughts. We know the Word of God says "many are the afflictions of the righteous, but the LORD delivers him out of them all" (Psalm 34:19), but we also welcome thoughts and lies from the enemy, telling us things will never get better and we will suffer forever. The devil wants to steal and control of all your thoughts and to keep you in a state of depression. Nurture your thoughts of God being bigger and better than your problems. Feed your appetite for the Word of God. The mind is very powerful. Encourage your hope. Increase your praise. Strengthen your faith. "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things (Philippians 4:8). It's true - one thought of your situation can enslave you and send you down a rabbit hole of depressive thoughts, but it's also true that one thought of Jesus, his goodness, his faithfulness, his grace, his mercy, his love, can lift you out of the pit. It takes strategy, discipline and practice, but when you catch the enemy stealing control of your thoughts, make him pay you back, sevenfold (Proverbs 6:30-31).

Come to me, all who labor and are heavy laden, and I will give you rest. Matthew 11:28

#hidradenitis #hidradenitissupprativa #chronicillness #autoimmune #autoimmuneillness #hswarrior #hswarriors #mylifewithhurley #godoverhurley #skin diseases #skincondition

1 note · View note

msaliscia · 4 years

Photo

So I had to make a mask to match my outfit this morning 😷 If we have to wear them, then I need to make it "fashion"😝 Factoid: I started sewing when I was about 3, got my first sewing machine for my 7th birthday. Currently I'm using my Granny's machine that was given to me when she passed. I've taught all my kids to sew on it. ❤️. #sewing #sewistsofinstagram #sew #mask #wearethevulnerable #immunecompromised #sewingprojects #autoimmunedisease #autoimmuneillness #cancer #thyroidcancer #thyroiddisease #spooniewarrior #spoonieprobs #mastcellactivationdisorder #mastcelldisease #gastroparesis #migrainelife #hesa #braindamage #fashionover40 #fashion https://www.instagram.com/p/B_fkDY7jDga/?igshid=swrb9sy22sfn

0 notes

echota-is-healing · 6 years

Video

My beautiful tribe member and soul sister @jtami made this amazing tribute video that has me in tears. #Repost @jtami (@get_repost) ・・・ ✨Part 2 of 2 of a 7 min version of “Medical Medium Hearts of Gold” video on my YOUTUBE (the link is on my bio) https://youtu.be/m4n0QtNQrB0 ✨ for everyone in the Medical Medium Community, Anthony William @medicalmedium, Spirit, and his team. I hope you get a chance to watch the longer version - this short one is only a little of it! I hope you enjoy it!💛I wanted to make this after the last IG he did in November. If you were there, you know that was just out of this world—the interaction with everyone and Anthony, and all that light and energy. There are never enough words to express my gratitude, which seems to be similar to how others feel about their indescribable suffering, healing and the Medical Medium community. 💛Thank you Anthony, and everyone for letting me use your re-posts on @medicalmedium, I’m sorry I couldn’t get everyone in! I tried to get as many people in as I could for the length of the 2 songs. 💛I hope this makes you smile, or inspires you to go make some celery juice haha! 💪💚😛 I did! 💛Thank you for your friendship and support. Lots of love to you and your families for the holiday season! ✨❤️🙏🏼❤️✨🎄🐶🐾🕊 #medicalmedium #MMtribe #medicalmediumvideo2017 #IcanSeeClearlyNow #johnnyNash #heartsofgold #heartofgold2017 #healyourbody #healyourmind #medicalmediumcommunity #healingpower #lifechangingfoods #ilovemyigfamily #thyroidhealing #mentalhealthsupport #gratitiude #videosofig #videocompilation #videomontage #healthandwellness #chronicillness #autoimmuneillness #autoimmunedisease #mentalhealthawareness #antidepression @medicalmedium @k_e_i_g_h_t @dolphinmelody @savaea @aneliesa.vegan @planthealingcrystal @fortheloveoflyme @alison__wu @vibrantlynourished @themindfulmenu @muneeza_medical_intuitive @the.healing.path @mylittlepaimei @jonny_juicer @echota_is_healing @amazed_by_plants @falco7615

1 note · View note

maxima12 · 5 years

Photo

Self love includes embracing the good and bad about yourself. I choose not to be silent anymore about what I’ve been through, but share with others who could be experiencing the same thing. This is my purpose from this point on. 💜💜💜💜💜#selflove #selfcare #hidradenitissuppurativa #hs #hidradenitissuppurativaawareness #HSawareness #onelifetolife #getinformed #invisibleillness #chronicillness #autoimmuneillness #invisibleillnessfighter #hsstandup #understandit https://www.instagram.com/p/ByS15n1hHvVzZIt9u4VFp2nJ9Fl08O1dfi2dgk0/?igshid=1o9gyigkqjvmn

#selflove #selfcare #hidradenitissuppurativa #hs #hidradenitissuppurativaawareness #hsawareness #onelifetolife #getinformed #invisibleillness #chronicillness #autoimmuneillness #invisibleillnessfighter #hsstandup #understandit

0 notes

naturalelementsby-l-blog · 5 years

Photo

⚠️ NEW ARTICLE ALERT ⚠️Auto Immune Diseases and Super Bug Concerns⠀ ⠀ Have you heard health officials all across the United States are warning of "a serious global health threat" from a super bug fungus that as of today is considered to be drug-resistant. The Centers for Disease Control and Prevention says the fungus called, Candida Auris, has already sickened hundreds of people in the United States....READ FULL ARTICLE 👇🏽👇🏽⠀ https://buff.ly/2GccVKd . . . @prilaga #autoimmunewellness #autoimmunepaleo #autoimmunehepatitis #autoimmunelife #autoimmuneillness #autoimmunehealth #autoimmunearthritis #autoimmunediseases #autoimmunedisease #autoimmuneprotocoldiet #autoimmuneplate #autoimmunehealing #autoimmunediseasewarrior #autoimmuneprotocol #autoimmunedisorders #autoimmunediet #autoimmunewarrior #autoimmunepaleoprotocol #autoimmune #autoimmuneencephalitis #autoimmunerkrankung #autoimmunefighter #autoimmunedisorder #autoimmuneketo #autoimmunes #autoimmuneawareness #autoimmunetribe #autoimmunethyroid #autoimmunediseaseawareness https://www.instagram.com/naturalelementsbyl/p/BxQBHPlF7x8/?igshid=1qeuuwt06ppir

0 notes

tropicanine · 7 years

Photo

make jokes about yourself to get going skmehow. if you're german you get it. well it's basicly saying bag animal which would be a marsupial. hence the stoma i found it was quite funny I even called an email of mine like that before. I just had to take it. #colitisawareness #colitisulcerosa #ulcerativecolitis #crohn #crohns #ibd #ibdorknownasinflammatoryboweldisease #photooftheday #may #bag #backpack #ourlifewithcrohns #illness #crohnicillness #autoimmuneillness #autoimmune @ulcerativecolitissupport @our_life_with_crohns

#ulcerativecolitis #autoimmuneillness #may #ibd #bag #ibdorknownasinflammatoryboweldisease #ourlifewithcrohns #photooftheday #crohns #colitisawareness #backpack #crohn #crohnicillness #illness #colitisulcerosa #autoimmune

1 note · View note

emilysstomach · 5 years

Text

I have been working on this topic and this article for quite a while. Thank you for your patience, and I appreciate you guys giving me the time to write it, as I wanted to be as detailed as possible and give as much information as I could, so that people can make an informed and educated decision on whether medical marijuana is right for them:

http://www.emilysstomach.com/2019/03/the-benefits-of-cannabis-for.html

I have always been an advocate for it. It has helped so many people I know.

#gastroparesisfighter💚 #gp #gpwarriors #gastroparesisfindacure #gastroparesissucks #GastroparesisAwareness #gastroparesisproblems #gastroparesis #GPbattleCry #GPwarCry #gpawareness #gpsupport #gppain #emilysstomach #chronicillness #chronicallyill #autoimmuneillnesses #sickness #sickofbeingsick #lifechangingdiagnosis #noenergy #medicalmarijuana #marijuana #cannabis

Follow me:

www.facebook.com/emilysstomach

www.instagram.com/emilysstomach

www.twitter.com/emilysstomach

www.emilysstomach.com

www.emilysstomach.org

www.slack.com/emilysstomach

www.amino.com/emilysstomach

www.pinterest.com/chikensrule

www.tumblr.com/blog/emilysstomach

2 notes · View notes

cr8tifleeme · 4 years

Text

...Woke up to find out you had left this earthly realm. A life that was just beginning to glimmer, a life just beginning to recognize what it truly was to live. I remember our conversations about lupus and how you said you was gonna fight. That’s all we know to do with this. Sometimes it’s one thing after another, sometimes it’s quiet, but we never know if and when it’ll just take you away. So, fly high Triumphant Soror Jakeem S. Wright. You are an ancestor now. 🕊🕊💙💙

#lupus autoimmuneillnesses #SororZ #zeta #Army #fighter and warrior

8 notes · View notes

sarahannee · 5 years

Photo

When “thinner” is the problem. 🙄 I know people think my difficulties gaining weight is a “good” problem to have because I can eat all of the comfort food I want without worrying about becoming overweight — but it’s not. I’m an adult who can’t seem to get my weight above that of a middle schooler. With ever drop of the decimal, I’m reminded of just unhealthy I am and it’s scary. #spoonie #fml #ibd #chronicillness #survival #autoimmunedisease #autoimmuneillness #costochondritis #endometriosis #bydls #thinner #butyoudontlooksick #invisibleillness #weightloss #notcool #anxiety #selfesteem #weightgain (at Broward County, Florida) https://www.instagram.com/p/ByZI-OChcUt/?igshid=qxn8vqf4bqsw

#spoonie #fml #ibd #chronicillness #survival #autoimmunedisease #autoimmuneillness #costochondritis #endometriosis #bydls #thinner #butyoudontlooksick #invisibleillness #weightloss #notcool #anxiety #selfesteem #weightgain

2 notes · View notes

anthonypaulh · 3 years

Text

ITP September Awareness Campaign

The 2021 ITP September Awareness Campaign is here again so here’s why it is so important and why we should all make an effort to get involved.

Please check the ITP Support Association website at www.itpsupport.org.uk and www.globalitp.org for further details of how to take part.

WHY IS SEPTEMBER AWARENESS MONTH IMPORTANT ?

One of the main lessons that I have taken from my ITP journey is that we all need to make more people aware of this very little known, enigmatic illness. Like most ITP sufferers, before I was diagnosed with it, I had never heard of it and frankly I really couldn't believe that I had it.

I had been experiencing ITP related symptoms for at least a year before I even went to the doctor to get checked out. These symptoms were mysterious, unprovoked , random bruising and terrible bouts of tiredness. I wish that I had recognised these symptoms earlier and got them checked. This is why we need to make other people aware of what to look out for.

After my diagnosis of ITP, I just couldn't really believe that I had anything as serious as that. I thought that the hospital had made a mistake. Maybe they had confused my blood test results with somebody else. Once it became clear that I really did have ITP, then I got angry.

Why me, how can I have ITP ? I had never been ill before, never smoked, never taken any drugs and always drank alcohol at sensible levels. I had lived my first 46 years without ever being in a hospital for anything other than a few stitches from football/soccer related injuries.

Well, so what ? ITP does not care much about who it chooses and when. Unfortunately 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, it can choose anyone, 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 it doesn’t mean that we cannot live very full and positive lives. ITP is manageable in most cases and not as threatening as many other conditions.

SPREADING AWARENESS ACTUALLY GETS RESULTS

There are certainly 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, very different.

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

It is worth remembering that until the TPO drugs were introduced the only treatments available for ITP WERE NOT actually designed to treat ITP. All of those options were actually borrowed from other illness/conditions and were not specifically designed to treat ITP at all.

Now we have the TPO drugs which have been specifically developed for the treatment of our condition. Other new drugs in development and hopefully coming soon are also specifically designed for the treatment of ITP.

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

The links are set out below and I am encouraged myself when I watch them to know how many more treatment options we now have compared to when I started out, as a wet behind the purple ears person.

Link number 1 - Dr Drew Provan - What’s new in ITP Treatment - https://youtu.be/lcC329pd-fY

Link number 2 - Professor Adrian Newland - The new ITP Guidelines - https://youtu.be/nd9FPx_hANM

The whole approach to ITP is so much more positive, more patient focused and inclusive. It is just so much 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 in our footsteps in 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 day to day and it is we who can tell others what to expect. If we don't inform people about ITP, then who will ?

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

SIMPLE THINGS WE CAN ALL DO in the ITP September Awareness Campaign

Join us at the ITP Support Association in our September Awareness Online Event (Full details will shortly be available via www.itpsupport.org.uk).

Engage with the daily social media postings that we will be making throughout September highlighting ITP. We will be using the hashtags #ITPaware and #global4ITP

Retweet and/or LIKE any TWEETS we put out & in doing so this spreads visibility of the campaign

Try posting out a few TWEETS or Facebook messages yourself - here are a few that you may wish to use -

A) ITP is a RARE DISEASE and is just one of over 6000 RARE DISEASES

B) ITP is an AUTOIMMUNE disease, of which there are over 80 including multiple sclerosis, pernicious anaemia, type 1 diabetes, Lupus & rheumatoid arthritis

C) About 5,000 people in the UK are living with ITP at any one time, the figure in the USA is between 60,000 & 100,000

D) In ITP the immune system mistakes platelets as being foreign & destroys them. It can follow a virus, vaccination or some medications, but often the cause is unknown.

E) There is no cure for ITP but there are many treatments which are used to raise the platelet count.

For more information about the Annual Global ITP September Awareness Campaign please check out the following link -

https://www.globalitp.org/index.php

#global4ITP #ITPaware #ITPSupportAssociation #Healthcare #Wellness #Autoimmuneillness #RareDiseaseUK

0 notes