Oh Dear! Spare a Few Likes!

Screen shot 2015-03-21 at 22.34.08

Hehehe! As you can see we are stuck on a funny number of likes over on the Facebook Page! If you have a moment, please click in and give us a like, Thank you! :)

While you are at it, check us out at these following links, I would love to hear from you :)

Facebook
Twitter
Youtube
Spreadshirt
Email

ANNOUNCMENT: Be part of a free trial!

medistori-graphicIMPORTANT ANNOUNCEMENT FOLKS!!

To all Irish Dysautonomia Awareness members and followers.

I am delighted to announce that Irish Dysautonomia Awareness has been selected to trial an innovative personal health organiser – the MediStori FOR FREE to our members.

Creative Founder of the MediStori, Olive O’Connor is a mum of three daughters whom have complex chronic illnesses, and she shares her own journey and her discovery on how to make her life of tracking appointments, managing medications, getting diagnosed & communicating easier by keeping a specialised diary. Olive is now looking for patient/ parent feedback on this clever patient led initiative, with the aim for it to be rolled out in our health services nationally in 2016.

If you would like this once-off opportunity to be a part of the design of this care package, PLEASE GO TO: http://www.medistori.com/join-team/ and input your details . The MediStori is completely FREE to our members and followers so ensure you add our name (Irish Dysautonomia Awareness) in the “Where You Heard of Us” section and DO NOT go to PayPal links.

For this, all Olive asks for in return is to fill out two questionnaires so Olive can make the MediStori the best it can be. For more information you can call the MediStori Helpline on: 094 90 10114 or email: trial@medistori.com.

I have already received one of these packs and have to say it is an excellent idea and way of keeping track of everything medical for anyone with chronic illnesses. I hope to do a full review of it here on the blog very soon :)

Thanks again to Olive O’Connor from MediStori for this opportunity :)

 

Great News! An Interview With Dr. Mustafa Ahmed, I Need Your Questions!

If you remember a few posts ago, I had mentioned I was looking for people to contribute to the blog by submitting some articles or anything they would like to share. That offer still stands to all of you but I am delighted to announce that on Friday, I was approached and offered an interview with Dr. Mustafa Ahmed, the interventional cardiologist who created The POTS Center.

Mustafa Ahmed MD, is a Cardiologist and Scientist, internationally recognized in areas including valvular and surgical heart disease and POTS. He was born in Nottingham, England, he went to medical school at the Victoria University of Manchester. After graduation he took postgraduate positions at the prestigious Manchester Royal Infirmary, Manchester, then the Queens Medical center, Nottingham. Dr Ahmed then moved to UAB where he was the first ever person selected for the highly competitive Physician Scientist Training Program with specialization in cardiology and interventional cardiology. – myheart.net

We discussed the possibilities of how best to approach this and I thought, why not open the questions up to all of you lot, the community reading this? Then everyone can contribute and have their questions answered by Dr. Ahmed.

If you have a POTS related question that you would like answered please get it to me before Monday the 23rd of March. Feel free to either email me on irishpotsies@gmail.com or leave a comment here or on the other social networks. Facebook, the private Facebook Support Group & Twitter

I am really looking forward to passing all our questions to Dr Ahmed and I thank him for this opportunity to raise more awareness :)

Get your questions into me, cant wait to see what you come up with!

Lette :)

Rare Disease Day – Irish Dysautonomia and Rare Disease Awareness

IMG_1758
Hi, I’m Lette and I have the rare diseases, Dysautonomia, EDS (Ehlers Danlos Syndrome), Pots (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope) and Gastroparesis.

What are these conditions?

Dysautonomia is the malfunction of the Autonomic Nervous System (ANS). The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, blood pressure, digestion, respiratory rate, pupillary response, temperature, urination, and sexual arousal. It is an umbrella term for various forms of ANS malfunction including Pots.

Pots or Orthostatic Intolerance is when you cant regulate your blood pressure and heart rate when you change from a supine or seated position to an upright position. For instance in my case, when I stand or at times sit up, my blood pressure plummets, heart rate increases, my blood pools in my legs and oxygen is reduced to my heart and brain and makes me presyncope if not completely faint a lot of the times. This Fainting is caused by NCS or also called Vasovagal Response/syncope. POTS is often accompanied by vasovagal syncope, with a 25% overlap being reported.[1]

Diagnosis usually requires a Tilt Table Test (TTT) and can show persistent increase in heart rate of at least 30 beats per minute (40 bpm if under 19 years of age) within ten minutes of standing.

Symptoms include:

NCS or Vasovagal Response/Syncope. From the wiki:
“There are different syncope syndromes which all fall under the umbrella of vasovagal syncope. The common element among these conditions is the central mechanism leading to loss of consciousness. The differences among them are in the factors that trigger this mechanism.”

Ehlers Danlos Syndrome Type 3 (Hypermobility Type) is a group of inherited disorders that affect your collagen which is in practically all elements of your body, skin, hair, nails, cartilage, bones, blood vessels, organs and eyes. As such this condition affects those structures in me causing broken bones, dislocations, subluxations, damage to joints, muscles, skin, organs, easy bruising, bleeding, severe pain, my eyes are affected and I am hard of hearing. I also have gastrointestinal issues including Gastroparesis. EDS also now has me in a wheelchair because of pain and instability in my pelvis, hips and lower legs.

Gastroparesis also called Delayed gastric emptying or Gut Dysmotility is when there may be partial paralysis of the stomach or intestines causing food to stay in the gut for an abnormally long period of time. This causes me chronic nausea, vomiting and at times severe pain.

There is no cure for any of these conditions, they can be managed with medication but flare ups are frequent and the conditions can progressively get worse over time even while being managed with meds.

My Diagnosis and first hand experience of treatment in Ireland

I was diagnosed with Pots in April 2011 after nearly a month in hospital and a ton of tests because of severe low blood pressure and constant fainting on sitting upright or standing. My first doctor after 2 weeks said to “Get out of bed and move around, you’ll be fine”, I was still fainting all over the place so needless to say we asked for a letter (being sure to put it in writing) stating that he as a doctor thought I was fit enough to be released. This letter never materialised and we asked for a second opinion.
The new doctors team did a serious amount of tests over the course of another 2 weeks or so and they found that I did infact have something wrong, an impressive case of a condition called Pots with NCS. I was started on a course of medication and told to research my new ailment and they would check on me with regular outpatient visits.

During this research I noticed that EDS was commonly associated with causing Pots and NCS and it explained a history of symptoms that I had experienced prior to all this. I approached my consultant about this when I next saw him and he was very dismissive. He agreed I had hypermobility but called it benign and that it wouldn’t need treatment, despite my symptoms.

Many hospital admissions later the dismissive nature continued and I quickly found out that there are no EDS Specialists in Ireland. There are no Dysautonomia Specialists either. The first step to seeing if I did have EDS was to meet with a Rheumatologist in Cork who had a special interest in Ehlers Danlos. This was October 2012 and after a consult with him, he had clinically diagnosed EDS Type 3 with possible overlaps of other EDS types, and recommended meeting with Prof. Rodney Graham in London who specialises in EDS and other Hypermobility Syndromes for a definitive diagnosis and treatment plan.

In and out of hospital a few more times, but start to feel well enough to start back to work in 2013, I absolutely loved it and still had good and bad days but could manage until the pots got worse again and the pain in my hips got so bad that I ended up in a wheelchair and was advised to stop working again within 6 months of starting.

A few more ambulance rides and hospital admissions later, my health was deteriorating and in May 2014 I started having seizures. The drugs I was put on turned out to make everything worse and I ended up in the ICU after having a 2hr 40min series of seizures. I was sent to Beaumont for tests and it turned out I didn’t seem to have epilepsy but that the first seizure may have been a once off due to the lack of oxygen to my brain after one of my faints and then the drugs they treated that seizure with, I ended up having a strange reaction to and they made the seizures worse. It took 3 months in and out of hospital to realize this and now that those drugs have stopped, I am delighted to say haven’t had a seizure since!

During these few months of being in and out of hospital with seizures, I set up a fund to help me get to London to see the Hypermobility specialist as there was no way I could afford to do this on my own. I got an amazing amount of support from family, friends and complete strangers of whom I cant thank enough! I got to meet Prof. Rodney Graham over in London in August 2014 and got a confirmed diagnosis of EDS Type 3. He wrote to all my doctors with the confirmed diagnosis and gave them advice of how my treatment should advance going forward. Advising that I return to London to get help with my Gastro and autonomic problems and referring me to Harolds Cross would be of great value to me. I am currently waiting for a referral for this since August 2014.

If proper systems were in place in this country, there would be no need to have to go to London for a basic diagnosis. But as there are no specialists or centers here and even a steady level of doubt among some doctors as to whether EDS is even a considerable diagnosis, even after being clinically diagnosed by a Rheumatologist. They didn’t seem to realize that there is no genetic test for EDS type 3, it can only be clinically diagnosed but they still doubted it from the rheumatologist in Cork. Once the letter came back from Rodney Graham on the diagnosis however, attitudes seemed to soften a little.

I was back into hospital in November and December 2014 with Gallbladder dysmotility and Gastroparesis. The level of care under this new surgical team of doctors was amazing and they were very willing to learn more about EDS and how it affects everything.

Today I take 18 tablets a day, need injections, pain management, physio, occupational therapy, have a full time carer (My amazing husband), I continue to faint and sometimes do so without breathing for long periods of time, I rely on a manual wheelchair but require a motorized chair, but I have been waiting for that for over a year now. Thankfully, though there are a few negatives through all these diagnosis, I have met phenomenal nurses and carers, amazing doctors and consultants willing to learn but the shortfalls are evident to any of us who are a patient or carer, we can clearly see that the health system needs a serious reform. So too do the social welfare systems, there are huge difficulties getting access to certain things which people are entitled to. The dietary supplement, Mobility allowance, mortgage interest supplement for example has been cut to new applicants, however those who are already getting these payments can continue to do so. The carers respite grant has been reduced and there are huge limits and difficulties in getting access to things like Housing Adaptation grants and the Drivers and Passengers with Disabilities Tax Relief Scheme. You can read more about that here.

Thankfully the Rare Disease Plan 2014 to 2018 Plans this major reform of the health service and the supports currently in place delivering better access to high quality service and care for both patients and their carers. You can read all about this proposed plan Here. However there has been no recent updates as to when it will be actively pursued and implemented while all of us currently with rare diseases have to wait in a system with no specialists, no treatment, no care. We have to travel to London when things like the Travel Abroad Scheme (TAS) is there within the HSE to send people abroad for treatment but it is not being offered or is being refused the majority of times to those who apply for it saying their care can be fulfilled here in Ireland when it can not!

In the meantime online communities like EDS Awareness Ireland and Irish EDS and HMS are pushing to appeal for awareness, support, recognition, specialist treatment and care and funding for our rare diseases.

We are Fainting goats, we are Zebras, we bend but we are not broken, we have invisible illnesses but there is always hope and the will to spread awareness of these conditions and difficulties. Lets make our voices heard.

Thank you for reading.
__________________________________________________________________________

Follow Irish Dysautonomia Awareness on Twitter, Facebook, Youtube & Spreadshirt and if you would like to support Lette to help her get back to London for proper treatment, you may find her Fund Here, Thank you.

 

 

Show Your Stripes for Rare Disease Day! – Guest Post

11016369_10205031264693934_216013319_nIn 2012, Yvonne Evans interviewed a woman from Kinsale about her disease, Ehlers Danlos Syndrome (EDS). Little did she know that the answers she has been searching for about her own illness had landed right on her lap.

There is an old saying within the medical profession: ‘When you hear hoof beats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.

11039423_10205031264493929_1594412320_nMy symptoms started as a child but and really got bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day.

A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much that I look pregnant. After my son was born, five years ago, I had no choice but to fight the fatigue. I am not anaemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world.

People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon. Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. But, while my joints were feeling ok, I was feeling dizzy and faint, more fatigued and irritable. Cold hurt me, heat made me faint, there was no relief.

For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again.

But things changed for me in 2012 when I interviewed a young woman who had connective tissue disorder called Ehlers Danlos Syndrome (EDS). When she explained her symptoms, I wondered did I have something similar? I thought no more of it, and we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, one day in 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.

I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Hypermobility Ehlers Danlos Syndrome. I was also diagnosed with Dysautonomia but unfortunately; I am still awaiting a proper diagnosis and treatment for that.

There is a good chance I will need to travel to London for autonomic testing. I cried with relief that finally, I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments.

The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life. I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild in comparison to many of my peers and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come.

The biggest help for me through all of this has been the ‘EDS Awareness Ireland Support Group‘ and ‘Irish Dysautonomia Awareness’ on Facebook and speaking to other people with EDS and the secondary conditions that go with it. Both groups are enormously supportive and concerned. Many of them have EDS and Dysautonomia that affects them so much they are in and out of hospital. Yet, everybody is equal in the group and no matter how trivial I thought my problems were in comparison, the support has been immense.

Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available. For more information about Ehlers Danlos Syndrome, go to ‘EDS Awareness Ireland,’ on Facebook. Please also give ‘Irish Dysautonomia Awareness’ your support and like them on Facebook too. ;)

Rare Disease Day Ireland 28th Feb 2015

IDA FB HeaderRareDDayIf you would like to submit your story, an image or anything you like to raise awareness for Saturday’s Rare Disease Day please email irishpotsies@gmail.com and I will run it on the Facebook page and blog, it can be anonymous if you prefer.

I left all of this a bit late but will attempt to do a blog update highlighting the shortfalls in the Irish Health System relating to the treatment of rare diseases and I hope to do a video.

I have been feeling pretty rough lately so I will do my best ;)

New Look for 2015, Looking for Guest Posters!

Hey all,

I was thinking about sprucing up this little blog and related social media for 2015, Perhaps a new look, guest posts, any suggestions welcome of what you would like to see featured, please let me know here or at : irishpotsies@gmail.com

As always, if anyone wants to write a post, draw a picture, do a presentation, a video, whatever you please on any aspect of Dysautonomia and it’s related issues, please just get in touch I would be delighted to post it here on the blog :)

Thank you all :)
/Lette