Kansas University Medical Center Vasculitis Conference 8-04-2018

Last weekend I had the pleasure of attending and speaking at the Kansas University’s Vasculitis 1 day conference.  I am an education junkie so I LOVE attending these conferences.  Even though, I have attended many and have been diagnosed for 11 years, I always end up learning a few new things that can better help me better manage my EGPA/CSS Vasculitis during each and every conference.

We are extremely lucky that as a community of people with Vasculitis, we have the Vasculitis Foundation working so hard to bring these regional 1 day conferences to many regional Vasculitis centers.

Doctors volunteer their time to help arrange these conferences and find all the speakers, calling upon colleagues to share their knowledge.  Many patients attend these conference and end up with a whole new team of doctors at their disposal.  It’s amazing to sit back and observe the interaction between doctors and patients.

Dr Jason Springer, from Kansas University arranged this conference and his attention to detail and passion to help Vasculitis patients showed in everything at the conference.  He was very approachable and patients knew they were with a Doctor that cares greatly about Vasculitis Research  and patients with Vasculitis.

Kalen Young, from the V-PPRN gave a very informative talk about the how and why’s of the the VPPRN and even surprised up with a few teaser results of some of the research projects many of us have participated in online.  It really brought home the concept that WE, as patients are needed to make a difference in this type of patient centered results.

Dr Tanaz Kermani from UCLA gave a wonderful overview of the medications used in treating Vasculitis and the side effects of those medications.  She was able to share a lot of the medication most Vasculitis patients have in common along with highlighting some very disease specific medications.  Her excitement for the the new medications that have recently been approved by the FDA and the meds that are in clinical trials raised everyone hopes that Vasculitis patients are finally getting options in medications and there may even be alternatives to prednisone  (for some types of Vasculitis) available in the near future.  I personally enjoy her talks very much, she is clear and to the point.  Her slides are always technical enough for more experienced patients just easy to understand to new patients.  Her honesty about the side effects of some of the medications is wonderfully refreshing,  she acknowledges the challenges but her quiet and knowledgeable demeanor brings calm and confidence to patients.   She is hosting a 1 day conference at UCLA on November 10th, if you are in the area it will be totally worth your time to attend.

Dr Selina Gierer gave a talk I had never heard before at any Vasculitis conference.  She gave a talk on the Immune system and the important role that an Immunologist may play on your health care team.  I was thrilled that patients were hearing about managing infections and when to seek out further help.  She explained the fine line of keeping our immune system suppressed while still allowing it to be strong enough to fight off infections.  Conference participants had many questions about vaccinations and she was incredibly knowledgeable and shared what she knew with us about this subject.  I hope she speaks at more Vasculitis events in the future.

There were a few breakout sessions and I didn’t get to all of them and I apologize that I will have to leave a few doctors and their talks out of my summary.

The highlight of Dr David Beahm’s talk on Sinonasal manifestations of Vasculitis was watching the VF staff look like they were at a horror movie when he showed a video of a nasal scope.  Many of us have had these done and to be honest, we are kind of used to seeing it all.  Seeing new people see this type of video for the first time always makes me laugh and remember the days when I had no idea what a nasal scope even was.  Sorry VF staff but you guys were funny to watch.

During the lunch break, I had the pleasure of speaking to the audience about Finding a New You after a Vasculitis diagnosis and why your life will never be the same and how that may not be a bad thing.   It is a subject I live each and every day and I was able to reflect on my toxic anger about being told I would have to find a new normal.  As many of you know, I have found peace within myself and allowed myself to seek out and be open to new opportunities in life but his was a very long and bumpy road.   I promised the audience to have my speech posted on this page soon so it can be shared and hopefully help others to allow happiness and peace to return to their lives.   I’m still working on the final written version…

 

Dr Rajib Bhattacharya informed us about Bone Health and he took time to discuss the newest studies about how long we can or should be on certain bone medications.  For many the idea of bone medications having a limited effective timeline was a new concept and you could see the conference participants were taking many notes during his talk.

Dr Springer gave the closing comments and left everyone feeling positive about the future of Vasculitis research.  I always commend the Vasculitis Foundation and the doctors who run these conferences for giving us the information we need, not sugar coating it.  Telling us the good, the bad and the Ugly but always giving us hope and leaving us with the belief that we are not alone in our individual fights against Vasculitis.

If you are able to make any of the future upcoming Regional 1 day VF conferences please make the effort and come.  It’s well worth your time to become better educated about your disease.

Here’s a list of the upcoming conferences:

UCLA:  November 10, 2018

— Seattle: January  12, 2019

— Mayo Clinic – Scottsdale, March 9, 2019
More information about these regional conferences is coming on the VF website, and publications soon.
And…  drum roll…. Joyce Kullman announced the multiple day International VF conference will be July 19-21st in Minneapolis near the Mall Of America.   Time to start saving your money for this multi-day not to be missed conference.

 

 


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NEW VF Etsy Shop needs your Art and Crafts

source site NEW VF Etsy Shop needs your Art and Crafts

On behalf of the Vasculitis Foundation (VF) I am beginning an Etsy shop that http://www.lahdentaiteilijaseura.fi/?siftifkar=bin%C3%A4r-optionen-strategien&864=d9 100% of the proceeds goes directly to the VF. This will be an ongoing fundraiser for the VF.

Many of us have had to change our hobbies since being diagnosed with Vasculitis and sometimes what emerges is a crafty artistic side.

If you are like me, you make things for family and friends or you just have the creations sitting around your house because someday, you plan on doing a booth at a local Craft fair. For me, the craft fair booth has never happened because I always seem to flare at the worst times.

I came up with the idea of a patient driven Etsy shop after seeing some of the marvelous Art and Crafts being posted on various Vasculitis forums. Your Art and Crafts will be used to raise money for the VF so we can continue to Dream Big: Faster diagnosis better, Less invasive treatments and, ultimately, a Cure for all forms of the disease.

http://theeasybreezyway.com/?parkyw=conocer-gente-gratis&c34=ba How this will work

:

You mail you Art/Craft to
see url Etsy VF
follow site 24195 Summit Woods Drive
http://www.lovelyappetite.com/?milkiwety=site-rencontre-ami-ado&d3f=3e Los Gatos, CA 95033

(if you are local we can arrange a pick up or meeting)

Please include your name, email address, your type of Vasculitis and if you have a selling price in mind for your Art/Craft.

You will be emailed a gift in kind donation letter from the VF for the art/craft. When you receive this email, it is up to you to value your craft, add on the shipping cost and save for tax records. The VF will only give you a letter saying what you donated but will not value it. Unfortunately under current tax law you can only deduct the value of the materials you used to make your craft and not your time or final value of the craft.

A fair market price will be set for your craft, pictures will be taken and it will be listed on the VF Etsy Shop. (once I have enough inventory the Etsy Store will open and I will post link). We will ship crafts to customers on 2 pre-set days a week. In the shipment the customer will receive your art/craft and a card explaining vasculitis with a link to learn more and donate to the VF.

The Etsy listing with include one crafter’s initial (either first or last initial) and type of vasculitis (if you gave me this info) or friend of Vasculitis. This way our buyers can relate to the crafter.

Crafts and Art does not have to be Vasculitis related.  Smaller items are inexpensive to mail but we are able to take larger items also.   Framed photographs, paintings, key chains, jewelry, seasonal items, carved wood,  table decorations, crocheted items, anything sewn, clay figurines.  Basically anything that can be mailed safely.  Please no Food items.   Anyone can create for this VF Etsy shop, you do not have to have Vasculitis to donate items.

Some Art/Crafts may be used as auction items at VF events.

I really hope this all makes sense.
The VF Etsy shop open by September 1st.

Please email EtsyVF@gmail.com with any questions.

Thank You,

Suzanne

Vasculitis Foundation Board Member

 


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VF Red Award — Nominate your diagnosing doctor today!

Do you have a special doctor who helped you obtain your Vasculitis diagnosis in a timely fashion?  Wouldn’t it be great if you could formally recognize that doctor and let them know how valuable they were on your road to early diagnosis?

The Vasculitis Foundation (VF) gives you a great way to recognize those doctors that put all the puzzle pieces together and solved the mystery so that you could get the proper treatment for your Vasculitis.

The application process is not hard to complete  (it can be totally done online)and the feeling of joy to have your doctor recognized is amazing.  How do I know this?   I nominated my Asthma Doctor for the very first VF Red Award and when he received the award I was thrilled to be able to present this award to him in a surprise ceremony in front of his peers.  The look of total surprise and honor on his face is something I will never forget.  The VF gave me the chance to show my doctor how amazing he was in making an early diagnosis and helping me obtain a better outcome because of it.

So, why not show your diagnosing doctor how much they mean to you and how much they have positively affected your life by making that early diagnosis?

The hardest part for me was only using 350 words to tell the VF about my diagnosis journey  and how amazing my doctor was in making that diagnosis.

So what are you waiting for?   Nominate your doctor today and as a bonus you get a free T-shirt.

VF Red Award Application

The deadline is Tuesday, March 6, 2018. http://www.qiongbupa.com/martisd/2316 The winners are announced during Vasculitis Awareness Month.

Background of the VF Red Award


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When Is Snake Oil A Good Thing?

http://jewelofmuscat.tv/pijibi/5197

ˈsnāk ˌoil/
noun
North American informal
  1. a substance with no real medicinal value sold as a remedy for all diseases.
    • a product, policy, etc. of little real worth or value that is promoted as the solution to a problem.
      “the new medication was denounced as snake oil”

     

Chronic Illness seems hopeless at times.  We ALL want to feel better and have a better quality of life, we want our ‘old lives’ back, the way we remember it… as everything being semi perfect.  We want the magic pill, the healing elixir, the curative therapy, the thing we can do to be back to our old normal.  Trouble is people and companies want us to believe there may be an easy cure and we don’t have to take Western Traditional medicine that may help while it may also damage other parts of our body.

Recently on Social Media groups there seems to be a influx on posting about ‘cures’.  This scares the crap out of me…  I worry that someone may totally stop following doctor’s monitoring and instead go for one of these cures.  CSS/EGPA is a Chronic illness.  A person does not become cured.  Instead we have remission or quiet periods, times when the disease is not actively trying to kill us.  For some it may never be quiet, for others it may stay quiet for months, years or even decades.

That being said I am a believer in alternative and integrative medicine to alleviate some of the side effects of the drugs we take.

I have tried alternative medicine.  Even some weird shit…  I know where the hope for the magical cure comes from. I also did cupping ( it did help with my cough at the beginning of my CSS journey) and Chinese herbal meds ( I had difficulty with the taste and tended to puke them up ).  I have done acupuncture (really helped me with Cytoxan nausea) and massage therapy.

The strangest thing I ever did was Chelation Therapy.  This was just a month prior to my official CSS diagnosis.  I was told by an alternative medicine doctor, after he tested my spit and hair, that my body was filled with toxins and needed to be cleansed of them  At that point I was so sick I would have believed anything.  I went to his office twice a week and got Chelation Therapy via IV and a large IV bag of vitamins (aka bannana bag).  Yes, It made me feel better but later I realized it was the bag of vitamins that was making me feel somewhat better.  In the middle of one treatment I had a Major asthma attack, it scared me and the answer according to this doctor was that I need more frequent treatments at $300 a treatment.  Chelation Therapy actually did help me….  How?

It made me so sick, that the CSS came out in full force and became easier to diagnose.  My Vasculitic rash lit up like a Christmas tree and my breathing was at an all time low.  So, did Chelation cure me, as the doctor swore it would… NO.  Did it help me?  Yes, in the fact that my CSS diagnosis came a month later and I was put on high dose pred and Cytoxan.  Did it make it worse?  Absolutely!  Could it have killed me if I only relied on it?  Yes, but luckily I was being monitored also by a wonderful doctor who was busy running all sorts of tests trying to find the answer.

I am not saying Alternative medicine will make you sicker, what I’m saying is be careful.  I love the concept of Integrative medicine.  Where you get the best of both worlds, Alternative and Traditional medicine.  I believe both can work in harmony within our bodies.  I need my Traditional medicine of monthly monitoring of my blood to see how active my disease is but I also like Alternative medicine to help with some of the side effects of the Traditional meds I have to take to stay alive.

I currently have a shelf full of vitamins. I take B-12 for energy, D because I was told mine was a little low, multi-vitamins because they must help somehow …  d-mannose because a doctor asked me to try it for my frequent UTIs.  Corn silk pills, also UTI related and a new combo of some supplements which may help with energy but seem to be an epic fail for me (but I am still testing it).  I have tried California legal CBD oil and many other ointments and alternatives for nerve pain.  I am very careful as to where I obtain my vitamins from to make sure they are pure.

I am a firm believer in… If some alternative makes you feel better, and is doing no harm to your body then go for it.  We must remember that just because it makes you feel better does not mean it will work for everyone and the danger of telling someone that this ‘cured’ you of something.  Your reader may go out and stop all their meds and try the alternative instead only to have their vasculitis doing silent damage to their organs.  I am scared that someone may stop all meds and medical monitoring based upon a FaceBook post and instead, drink the tea, use the oil, swallow the herbs, cleanse their colons, starve their body of nutrients, or rely upon a healing circle and be silently killing themselves.

I think we owe it to each other in our chronic illness, Vasculitis community to share information but also make sure you are clear that the alternatives are not a cure.  This is no current cure for CSS and Vascultis.  We need to be clear on how it may have helped you with XX symptoms but you are also taking…xx. or were taking…xx with it.   We need to share how much it costs… most alternative therapies are not covered by insurance and vitamins alone could set you back hundreds of dollars a month.  We need to share how long you need to be on that alternative, there is a mistaken belief that some alternatives are a quick fix, many are life long.  We need to stress the importance of monitoring,  both laboratory and doctor.  CSS has killed one too many people that I have met online and many times it’s because a person was not being monitored closely enough and the disease flared.

So, in closing beware of Snake Oil — IF something seems too good to be true, it probably is false.  Now, I must go back online and send $$ to that Nigerian Prince who promised me millions in return.

https://dunkl.co.at/deposti/5725 This post was inspired by a FB post on alternative medicine is written by one of my favorite writers on FB.   She takes time to look into her thoughts on  alternative medicine while sharing her experience.  Her writing, under the FB page, Vasculitis Journey have always been open, honest and from the heart.  Go read her FB page and enjoy.
http://theftzapperfence.com/?makisf=mujeres-solteras-whatsapp&561=b9 Also, if you want to read so medically sound pages on CSS and want more than the jargon and figures.  Go to Michael’s pages at www.EGPA.info  He gives some great information that is easy to read and understand and answers some of the major questions we have with CSS/EGPA.


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It’s Hard To Be Brave, When…

When you suddenly become sick with any illness you find yourself feeling very small.  Navigating the world of doctors, nurses and other medical personal is like entering a strange new world.  You find yourself losing your voice and unable to speak up when something is just not right.  Any insecurities you may have are magnified and suddenly you may be unable to advocate for yourself.

Now think about having a chronic illness, knowing you have a lifetime to deal with the medical profession and feeling your own self advocacy voice growing weaker and tired.

A.A. Milne’s Piglet in Winnie The Pooh says it best.  ” It’s hard to be brave when you are a very small animal”.

I am 10 1/2 years into a lifetime of Churg Strauss Vasculitis and my voice is scared and weak at times.  I pride myself in being able to help other patients out and helping them to self advocate but sometimes I find myself unable to follow my own advice.  As, a patient you get put in situations that are scary and you depend greatly on the trained medical staff around you.  Most of the time they are amazing, but sometimes you get someone who’s either having a bad day, needs more training, just doesn’t care or is totally burnt out.

Yesterday, I began home IVIG treatments.  I get Intravenous Immunoglobulin (IVIG) treatments once a month so my immune system is strong enough to fend off common illness and bacteria.  I have  hypogammaglobulinemia because of years of Rituxan usage to keep my Churg Strauss Syndrome under control.    I have been doing these at a medical center but my insurance company had decided that I was no longer allowed to have them at a medical center and I would have to get them at home from a home infusion nurse.  I was not happy about this, I fought it but finally had to give in so I anxiously awaited the nurses arrival.

She arrived and I was hesitantly psyching myself into the fact that this would be a better way to get my infusions.   I have a mediport installed so there was not the problem of trying to find a vein for an IV.  It’s a simple stick into the port installed under my skin, I’ve never had any issues with it.  That’s what I thought.

My first clue that something was up should have been how disorganized this nurse was and how I had to remind her I needed to take my premeds.  The putting the needle into a mediport is a sterile procedure, the chance for infection is high if procedures aren’t followed.  I watched her, and again saw some problems.  Once again, I did not speak up.  She was going to stick a needle into me, I sure as hell did not want to make her angry.

She inserted the needle and it burned like hell, something was NOT right!  no blood return…  I told her she was not in the port — she didn’t believe me.  Finally she believed me and pulled out the needle.  It was totally bent.  I pointed this out and she stated.. “sometimes the needles come that way”, I knew this was not right.  But I was feeling so small, and so vulnerable.

I stupidly allowed her to try three more times.  Each time was worse.  I actually cried since once she tried to insert in Heparin to prove it was in and instead it went into my tissues — I yelped, I cried, It burned like hell.  Still I was the polite patient… I actually told her not to feel bad about it.  What the heck was I thinking?  It was totally her fault.  IF I saw someone doing this to one of my family members I would have stepped in and yelled at them but instead I just cried and took it.

Finally she tried one last time.  It had to be the last time since she went through ALL my back-up supplies.  It went it and was finally working.  I then had to sit there and be pleasant to her and thank her.  She then proceeded to move my medication to IV bag from the original containers and give it to me (that was another fiasco…)

In the course of the conversations she had with me I found out she has severe carpal tunnel in her hands and had lack of feeling in them.  She shared this because she was going in for surgery in 2 weeks.  WTH?  What was she doing trying to insert needles then?  Suddenly all the things she dropped made sense.

Six hours later she left.  I actually Thanked her for coming (what was wrong with me?).  The door shut and I let it all out.  I screamed, I cried and I cussed like a sailor.  I thought I was going insane so I texted a friend and she was appalled by what happened.

WHY could I not advocate for myself and kick the nurse the hell out of my house?  Why did I allow her to cause me such great unnecessary pain?

The answer is weirdly simple.  I was always taught to respect people in the medical profession.  I was scared she might hurt me even more if I told her what I really thought.  I was sick and felt powerless.  I was Piglet.

The medical company that oversees my IVIG medication called me today.  I told then not to ever send that nurse again.  They asked me what happened.  I explained the 4 bent needles and her spending way too much time time transferring the IG solution into an IV bag.  They were taken back because it is not policy to break the sterile environment and transfer this medication, it was suppose to be given directly from the bottles.  I didn’t know this.  I also told them she had Carpal tunnel and the hand problems, they were also totally unaware of this.  There were a few other things but I thought this was enough to tell them.   They promised me a new nurse next month.  But, what happens if the next one is even worse?

I think we, as patients, can be strong for everyone else but have trouble sometimes advocating for ourselves.  This happens both with procedures and in a normal doctors visit too.   I have to Stop trying to do this all on my own (I prefer for nobody to see the ‘sick’ me).  I need to start having a loudmouth, outspoken advocate with me.  I need someone to ask the questions I am scared to ask and point out when something is not right.

I think, as chronic illness patients, we don’t like to ‘bother’ others.  So, we suck it up, and just do things on our own.  We don’t like for others to see us in pain, so we hide it.  We feel helpless at times and we keep it all inside.  We don’t want to be labeled as problem patients.

I have taken a friend, as an advocate, to a few of my doctors appointments in the past.  Usually difficult doctors and I want to know I am am crazy or it is a problem with the doctor.  My friends always introduce themselves as the advocate and have a list a questions we have talked about, one in particular can be a real forceful bitch, but that is just what I need sometimes.

Piglet learned to be brave with the help of his friends.  I need to take my hint from Piglet and learn that I am not a ‘bother’ to my real friends and let them help me.  Ten years in and I am still learning.  Please take my advice so you can get better care too.  Don’t wait 10 years to realize you may be very small but you can be brave and speak when something is wrong with your medical care.Other Posts by Karen in Wonderland

CSS Organizations and Medical Centers

CSS on Social media

CSS and Vasculitis in Videos

Useful Web pages for CSS

 


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Giving Tuesday 2016

Diagnosing Churg Strauss (CSS) is difficult at best and nearly as hard as finding a stethoscope-medical-book-2696008unicorn at it’s worst.  Part of the problem is that Doctors may have never heard about CSS.  In a lot of medical textbooks it takes up less than a page.  Diarrhea is more covered in medical textbooks than CSS and other types of Vasculitis.

We are rare.   I fully understand that we may be only case our doctors ever see.  imagesMost of us end up in the hospital with some organ damage before diagnosis.  Wouldn’t it be nice if more people could be diagnosed before organ damage?   before lengthy hospital stays?  before they have to numerous doctors all while feeling they are ‘making all their symptoms up’?  Is there a way to better educate doctors about CSS and other Vasculitis diseases?

How much is it worth to you to educate doctors?  How much would you be willing to give so doctors to know we are not such a rare anomaly? How much would you give to help doctors the knowledge to better manage our illness?

I ask these questions because you have a chance to help.  You can make a difference.

The vasculitis_logo  is sponsoring a class for doctors (aka CME class — doctors need to take so many of these per year to keep their licenses active).  They are partnering with the Cleveland Clinic to offer such a class.  It’s called, Primary Vasculitides: Best Practices and Future Advances.  They need OUR help in order to make this happen.  Would you be willing to give a few dollars to make this happen, especially on Giving Tuesday 2016?

It’s going to first originate as an in-person, one-time only presentation through the Cleveland Clinic next spring. They are going to record this entire session and then turn it into an online CME course that doctors anywhere can access and use.  This makes it so once available online we can gently steer our doctors toward it.

Here is the link to the course information:

giving-tuesday-300x265

http://www.vasculitisfoundation.org/giving-tuesday-november-29-2016/

Educating ourselves about our illness has always been my #1 priority.  So this opportunity to educate doctors is an easy donation for me to make.  I understand our medical expenses are astronomical at times and we barely have a few dollars to spare but if you do this would be a great cause.

sharingiscaring2Share and post this to you wall.  Can you imagine if just 1/4 of your friends and family gave $5 each what a difference this would make in helping to educate doctors.  Imagine if someone you knew was looking for a great cause to donate to before the end of the year decided to give $100 or more?  Don’t ever think small donations do not add up, they do!  So, please think seriously about giving any amount to help educate doctors so that they can better help us and yet to be diagnosed patients.  You do not have to wait till Tuesday to donate.

This post is easily shared though my Karen in Wonderland Facebook Page.

Also you are much better off donating to the Vasculitis Foundation than donating to dig a big hole.  

hole-4c32a341ed97d9f1fd88cdc4e33c34813c8e086d-s1300-c85

Seriously?

Here’s the very easy to use direct donation link.  Not the one to dig the hole.

https://vasculitisfoundation.secure.force.com/pmtx/cmpgn__Donations?

 

Thank you, and with Education we have a better chance of better outcomes and better quality of life.

rencontre avec psychologue Suzanne (aka Karen in Wonderland)

 

 

 


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Light at the End of the Tunnel

img_3413When I was first diagnosed with Churg Strauss Syndrome (CSS) all I wanted to do was run away.  Run away from the diagnosis, run away from reality, run away from my body.

After speaking with my doctor which quickly multiplies to be many doctors I was so confused, scared and just wanted answers.  Nobody seemed to have any, there were no clear cut medical protocols for CSS and I was the first CSS patient for most of my doctors.  I realized I had entered a tunnel… a long dark tunnel.img_3414

I was so ignorant of CSS and all that came with it.  I relied heavily on a Yahoo group for information and glimmers of hope.  SO many wonderful people told me things would be OK and helped me stand on my own while navigating the new world of specialist appointments and uncertainty.  At that time there were no Facebook groups about CSS.  I would say I had come out of the tunnel but the Winding road laid ahead.

I spent many, many hours at a local medical library getting research articles and reading everything I could find.  I ordered medical textbooks just to read one chapter on Vasculitis and CSS.  I was becoming an unofficial medical student out of necessity to understand my illness.  The road was less traveled but with each piece of knowledge I felt more empowered.  The information was both hopeful img_3418and doom and gloom.  I read it all… I kept researching, I needed to know everything to be in control.

I attended Vasculitis Conferences put on by the Vasculitis Foundation and tried to understand everything the medical experts were presenting.  What I did not understand, I looked up and studied.  The more educated about CSS I became, the more at peace I became.  I stopped running (although sometimes when new things pop up I still feel an urge to run).  I realized that for me education was the key to becoming empowered and calm about CSS. (link to my conference notes from 2014 UCLA conference on Vasculitis)and  ( 2016 UCLA conference) and (link to my Jacksonville FL conference notes)

Fast Forward ten years.  The internet is now so vital in researching any rare illness and there is such a wealth of information out there.  There are many good sites out there andimg_3425 many Facebook groups to ask other people with CSS questions.

For the past few years I have felt the need to share the knowledge that I have obtained and try my best to share things in these Face Book groups.  I try to read the articles and then pass them along with summaries or my own comments.  I get to share how I cope or things I find may work.  I get great pleasure out of taking complicated information and breaking it down to easy to understand parts (it’s the teacher in me coming out again).

I have found two other wonderful site and blog that seem to compliment what I do with my own web site and FB blog.  These are not big medical center sites — these are 2 sites run by CSS patients so they speak from the heart and understand what we are going through.

First off, Michael is from the UK and has a wonderful down to earth site about CSS/EGPA.  He speaks iheadern free flowing language that is easy to understand and poses things in question and answer format.  He also does his own artwork which is very quirky and fun.  If you have never seen his EGPA pages I highly recommend you spend some time investigating them.

Second is a FaceBook page called Vasculitis Journey.  The writer is newly diagnosed and 12341053_1673334592882647_837626086009016352_nwrites totally from the heart.  She is not putting on a show, she writes about her experiences and it is like reading a travel journal of her adventures with CSS.  I love her style and her positive attitude.  You can tell  she is searching for answers and scared.  By sharing this we see that she that she is actually a little bit of each one of us.  Scared and searching for answers.  She is a person that someday I want to sit in a coffee house with and talk for hours.

I appreciate the positive messages of both these sites and love the idea that our 3 sites are such compliments.  Michael’s EGPA.info is great info and full of resources and factual information.  My site and blog are personal experience with links to information and research.  I write from my heart and try to link it with information we may be craving about CSS.  Vasculitis Journey is like reading a wonderful book.  Chapters are her posts about life events and challenges with CSS as she continues her quest for answers.

I hope these three personal CSS sites/blogs will help you navigate your winding road of CSS and may help you get out of a tunnel, if you are stuck there.

img_3337

go All road/tunnel photos were taken by me on a drive home from a doctors appointment in San Francisco along the California Coast to Santa Cruz.

 

 


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EULAR Report and informative Webinar on ANCA Vasculitis Treatment

We have a rare disease and it is up to us to make sure we get the best medical care and 9f4dfaa85e32a668c3063db2f8cc1833part of that is self education.  IF you read only one thing about your ANCA related Vasculitis all year… then THIS should be it.  Seriously, not kidding.

First off Granulomatosis with polyangiitis (GPA, Wegener’s granulomatosis), microscopic polyangiitis (MPA) and eosinophilic granulomatosis with polyangiitis (EGPA, Churg-Strauss syndrome) are termed the antineutrophil cytoplasmic antibody (ANCA)- associated vasculitides.  Even IF you are ANCA Negative (50% of CSS/EGPA patients you are still considered to have an ANCA Associated Vasculitis.

On June 23rd, 2016 a new document was published that updated the guidelines for treatment of ANCA Associated Vasculitis.  This was the first major revision of treatment guidelines since 2009 and in many ways it is a game changer because of the newer biological medicines.  It was created by European League Against Rheumatism (EULAR). Which includes doctors, nurses,  researchers and even a patient.

Fifteen recommendations were developed, covering general aspects, such as attaining remission and the need for shared decision making between clinicians and patients.

Most of our doctors who oversee our Vasculitis diseases may have not come across this paper yet.  It is up to us, as a community that fight this illness every day to make sure our doctors know of the existence of this document and read it.  Please make copies, ask your doctor if they have seen it, hand them a copy… leave them a copy, mail them a copy.  b041636c2bce52c57a9149ccbb9487a6Many doctors do not have time to research and see the newest guidelines because they are too busy having to a patient every 15-30 mins.  It is really up to us, as educated patients to put this in out doctors hands.   I KNOW this is asking a lot but you may be helping yourself and others in the process.  Plus you owe it to yourself to read it…  and maybe reread it a few days later so things make sense.

What is reading and comprehending is Not you ‘thing’?  (gotta love brain fog)  Well, Great News then.  The Vasculitis Foundation offered an amazing Webinar last week in which Dr Richard Watts goes over the Guidelines for treatments and offers more background on the treatments with some very informative slides.

14725544_1584574984980762_2908869520809828059_nI had some misunderstanding about the EULAR report and Dr Watts really gave me more insight. (one was that things may have been rated a ‘C’ — not because they are unimportant but that there is lack of research on it).  These guidelines are not common practice yet and maybe by us, as patients, understanding them we can ask the questions that need to be asked and obtain better outcomes for ourselves or our loved ones.

So you should READ the EULAR report AND WATCH the Webinar.  Seriously… get yourself some popcorn.  Also ASK questions if you are having trouble understanding the contents of the webinar.  There are many very helpful groups on FaceeBook that can help or call / email the VF if you need help in seeking the best medical care or you just want to Thank them for the Webinar.  If you have ideas for future Webinars let the VF know too.

logo-blueEULAR REPORT on ANCA Associated Vasculitis Treatment

vasculitis-uk-logoThe Vasculitis UK has on their website a laymen’s guide to the new guidelines.  John Mills was the patient that participated in developing these guidelines.  Thank you Susan Mills for sending me this link.

 

logo1-300x60Webinar by Dr Watts on ANCA Associated Vasculitis Treatment

Webniar Time stamps — so you can go to the section that most interests you.
(thank you VF for publishing the time stamps)
What is ANCA Vasculitis 2:35
Aims of disease management 3:08
Future Challenges: Mortality Relapse 4:16
Background on the two sets of guidelines 5:40
Evidence Strength 7:51
Recommendation 1 9:34
Recommendation 2 10:20
Recommendation 3: 11:11
Cyclophosphamide Classical Approach 13:57
Rituximab–RITUXVAS 14:31
Outcomes based on ANCA Type 18:52
Recommendation 4 19:54
Recommendation 5 20:32
Recommendation 6 Plasma Exchange 21:00
Recommendation 7 23:01
Rituximab for remission maintenance in relapsing AAV 24:16
Recommendation 8 31:05
Conclusion 38:01
Q&A Session
Q: How do we get these recommendations out to the doctors? How do I get my doctor to read them? 40:19
Q: What do these recommendations mean to me as a GPA patient? What do they mean in terms of how my disease is managed? 42:16
Q: Please elaborate on the recommendation that says AAV patients should be treated by centers of excellence in vasculitis. Isn’t that what should be happening now? 46:54
Q: Can you explain what the Level and Grade numbers mean on your slides? 49:12
Q: How safe is it to be on Rituximab beyond the suggested 24 month term 51:40
Q: Are there any research studies that show a significant difference between stopping treatment with steroids and Rituximab after six months vs following up with Azathioprine? 58:52

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Living well with EGPA: The healing process

Living well with EGPA (Eosinophilic Granulomatosis with Polyangiitis )

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The healing process

(EGPA) Eosinophilic Granulomatosis with Polyangiitis is also known as (CSS) Churg Strauss Syndrome

Written by Shawna

Being diagnosed with EGPA brought many things.  Relief because I finally knew what was wrong with me.  Disbelief that such a fit, healthy person could become so very sick so quickly. Fear of an uncertain future.  Resentment at no longer being able to do the things I used to do.

Nine years ago, after I was diagnosed and coming down from the euphoria of extremely high dose steroids, the reality of my disease – and my shattered life – really hit me. The doctors told me that I had done nothing “wrong” to cause the disease. They said that it was not my fault, and short of taking the meds they prescribed, there was nothing I could do that would reduce the impact of the disease on my life. It’s terrible, and we are sorry, but that’s the way it is, they said.

I refused to believe that there was nothing I could do, and poured myself into researching the condition and alternative therapies that might help me. In hindsight, I was frenetic and almost desperate to avoid what I perceived as the progressive horrors of things to come. To broaden the focus of my team of 6 medical specialists, psychologis1t, and family doctor, I began my very active, and completely exhausting search for answers. I read books, talked to anyone I could who had a chronic illness, and was willing to try just about anything. I adopted an anti-inflammatory diet. I visited Traditional Chinese Medicine (TCM) doctors for herbs and acupuncture, osteopaths, massage therapists, naturopaths to address food allergies, sensitivities and an overactive immune system, and yoga teachers for gentle exercise and “new age” spiritual guidance, among others. Some claimed that they could cure me. Some wanted me to stop taking the medication that had saved my life. Some were more realistic and happy to work with me and my core physicians. I was armed to the teeth, ready to fight this disease with everything I had.

Then I came across Dr. Andrew Weil’s book, “Spontaneous Healing”. It changed everything for me. Finding this book at the time that I did enabled me to slow down the constant searching for answers, take a deep breath, and really settle into living well.  Dr. Weil claims that he has witnessed seven characteristics in people who have experienced “spontaneous healing”, where the body heals itself.  (Not cured necessarily, but healed). My interpretation of the characteristics exhibited by people who have experienced “spontaneous healing” are:

1. Did not take “NO” for an answer

2. Actively sought out information, and took charge of their health

3. Sought out other people who had been healed (for support, guidance, and information)

4. Developed a constructive partnership with medical people

5. Made radical changes to their lives (usually lifestyle)

6. In hindsight, see their illness as a gift, because it forced them to change their lives

7. Cultivated an attitude of self-acceptance (of themselves, and who they are.  i.e., “I am not my disease”)

4Being “cured” and being “healed” are two very different things.  My disease is incurable.  But it can be quieted. I truly believe that I can heal.   I will heal in my own way, using the therapies that work best for me. I can live a productive, happy life.

I had already been addressing numbers 2, 3 and 4 with vigor before reading the book.

Number 1 – refusing to take “No” for an answer – was always, and still is, a fundamental part of my personality (like it or not). So that left three more things to work on…

Doctors told me that I did not require any lifestyle changes. Initially I believed them. I exercised, ate well, did not smoke and rarely drank, but I got sick anyway.  No one could definitively explain why.  After much soul-searching, I came to understand that my classic “Type A” personality likely contributed to my illness. I had never worried about my stress levels; my blood pressure, cholesterol, and weight were always well managed. But I believe that the constant pressure I put on myself, and the high expectations I had, certainly did not help my immune system deal with the situation that was brewing. I worked very hard to become more laid back, patient, and accepting of situations. Friends and co-workers who haven’t seen me for a while comment on how much I have changed. I am still a work in progress though, as new people I meet still find me to be determined and persistent.

How is it possible to see a life-threatening chronic illness as a gift? Accepting my illness as a gift required a massive shift.  My life “before” was pretty good.   But now that I cannot spend my precious energy on pursuing my career and squeezing fun and activities into every moment of every day, I have been given the gift of time…to notice birds singing, to walk my son to school, to read books, to practice yoga.  To nap – even if I do not really have a choice in that matter.

Time to heal all parts of me – physical, emotional, mental, and spiritual. Time to really live.

Developing an attitude of self-acceptance is a challenge for most people, health3y or not.  For me, I needed to acknowledge that I HAVE a disease, but I AM NOT my disease.  Often, people define themselves by what they “DO”… career, parent, activities, friend…. and not by what they really “ARE” deep down inside.  So when what we “DO” is taken from us through illness, we flounder, and feel like the disease has taken “US”.  It’s a very hard road at times.  I have been on this path for over 9 years, and acceptance is still difficult. Flares force me to revisit this acceptance piece, over and over again. It must be true that life lessons are presented repeatedly until they are learned. I am working hard on this one.

I still fight this disease every day; I absolutely refuse to lay down and let it kill me.  I also need to be gentle in my fight.  This is probably the most critical learning on my journey thus far. I do take responsibility for my medical issues, treatments and complementary therapies, stay on top of research, and fight for what I think is the right way to address this disease for me.  But I am gentle with my body.  Gentle with all of me. Pushing too far one day means that I pay for it for many days afterward.  I am grateful for what my body can do, even though it is only a fraction of what it used to be able to do.   I have immense gratitude for what I do have, and no longer grieve constantly for what I have lost.   In many ways I am so much happier and maybe even healthier than ever. Perhaps this is what “healing” really means.

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Some good articles for all CSS/EGPA patients to read

IMG_1078Just sitting around resting and came across some really great articles for CSS/EGPA patients.   Some of these I may have shared before but they are worth rereading.

Feel free to share and bookmark so you can read now or later.

  1. Eosinophilic granulomatosis with polyangiitis (formerly Churg–Strauss syndrome): where are we now? by Matthieu Groh, Christian Pagnoux, Loïc Guillevin
  2. Eosinophilic granulomatosis with polyangiitis (Churg–Strauss) (EGPA) Consensus Task Force recommendations for evaluation and management.  September 2015

  3. Long-term patient survival in ANCA-associated vasculitis.  2010. (remember this report is 6 years old before Rituxan and other meds have become readily available)

  4. Value of commonly measured laboratory tests as biomarkers of disease activity and predictors of relapse in eosinophilic granulomatosis with polyangiitis.   June 2014

  5.   17 December 2015| PDF Full-text (903 KB) | HTML Full-text | XML Full-text
  6. Eosinophils in vasculitis: characteristics and roles in pathogenesis.  July 2015 (good graphics in this article)
  7. Acute Coronary Syndrome: An Emblematic Case and Literature Review.  PDF file 2014

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