Professor Graham Hughes' Monthly Blog - December 2018

[MaryF]

ghic.world/self-help/blog/d...

MaryF

[KayHimm]

Thank you for posting Professor Hughes’ comments on the association between anti-phospholipid antibodies and autonomic dysfunction. My doctors picked up on the problem fairly early. It will be interesting to see if researchers can determine which antibodies are causing the problem when a patient has more than one that can cause dysautonomia. Very interesting information. Thanks again for sharing it.

[leakeadea]

Very interesting to read about Professor Hughes coming across a patient with Ehlers Danlos Syndrome and APS like me!

Strangely tho, I have just tested negative for autonomic dysfunction. I was expecting to test negative because I've never believed that my crazy high heart rates and oxygen desaturations were caused by autonomic nervous system issues.

[KayHimm in reply to leakeadea]

You are in a special and newly understood category!

[KayHimm in reply to leakeadea]

What tests did they do for autonomic dysfunction? You do have concerning symptoms that involve the autonomic system.

[leakeadea in reply to KayHimm]

I had the full barrage of tests over three days as an in patient, tests included were, 24 hour blood pressure monitor, tilt table tests, tilt table and meal test and also an exercise test.

I have always believed that my high heart rates and oxygen issues are been caused by my damaged micro blood vessels of the alveoli in my lungs (where oxygen transfer takes place), caused by years and years of small and micro clots going into my lungs. I think I may have exercise induced pulmonary hypertension and also believe that my circulatory system has been completely messed up due to having had a blocked IVC Filter for so many years.

[KayHimm in reply to leakeadea]

Very complicated. I have not heard of the tilt table/meal test. They were really working you up! You do have a lot of difficult symptoms. It must be hard to cope with it all. That exercise test and the tilt table are for the birds. Glad they are over for you. You need to pace yourself.

[leakeadea in reply to KayHimm]

I was sub theraputic the week before my admission and so I was already in an APS flare. My flare just continued to get so much worse because the tests were so brutal and my INR just wouldn't come up! Thankfully it's back up where it should be now.

I have oxygen for my breathlessness and low oxygen levels and I'm still pretty much house bound but at least the oxygen helps me to get out in my garden again.

[KayHimm in reply to leakeadea]

They are brutal, especially for someone as fragile as you. I admire how you still take pleasure in your garden with all you are coping with. I am so glad you are feeling better. Really hoping for more good days for you.

[leakeadea in reply to KayHimm]

Thank you, I wish the same for you too😁!

[Penelope-Mary]

Thank you Mary. Prof Hughes is a gem.

[KayHimm]

I wonder if it should be considered a trauma — as in surgery or an accident. The autonomic system is being taxed in order to get the results. Why would that not affect autoimmune responses? You really got sick from those five days.

[lupus-support1 Administrator]

Thanks Mary, I will repost in LUpus Patients Understanding & Support (LUPUS)!

[leakeadea]

I'm really sorry about your horrific flare after the autonomic tests, I can relate as the flare I had after my operation last year was brutal!

It took me six months to recover from my operation flare up, mostly because I was still fighting to get my APS diagnosis, so wasn't adequately anticoagulated.

What is shocking me the most, is how little care and understanding we get from our so called APS specialist heamatologists, when it comes to the pain and suffering we have to endure when we are sub theraputic and in a flare. 😱😵🤔

During my autonomic tests admission, it seemed like hardly anyone understood what an APS flare is like, which is odd because as a neurological hospital, you would think they would know about something that causes strokes. 🙄😮

I got very little empathy or understanding regarding the affects these tests had on me, particularly from one of the autonomic doctors, who wanted to blame all my symptoms on anxiety! I also had my Ehlers Danlos pain and limitations to deal with on top of my APS flare and between the two, I could barely stand up and was in soooooo much pain!

The ward nurses were lovely and made sure I had the pain relief I needed and there was one doctor, not on the autonomic team, who understood EDS and APS and he was very kind and understanding too.

I really wish we could get doctors to realise what terribly debilitating and life limitating symptoms APS puts us through 😕

[lupus-support1 Administrator in reply to leakeadea]

Your experience is not rare. It's because the majority are women, along with the impoverished knowledge of autoimmune conditions, that result in the accusation that "its all in the mind!" by some doctors.

Patients are vulnerable and feel unable to reproach the medical professional. It's actually a form of abuse as this is a power relationship!

Hospitals in the U.K. have a Patients support system, I think it's PALS, where you can complain and if you have a good GP, they may also help support you. In relation to SLE, Dr Daniel Wallace (Cedars Sinai Hospital, Los Angeles) wrote that if SLE was a "male" disease, it would have better funding and support!

With good wishes,

Ros

[leakeadea in reply to lupus-support1]

I am so grateful for your response Ros, to know that others have experienced the kind of abuse I have is comforting but also deeply concerning.

Throughout my many years as an NHS patient, I've suffered multiple counts of negligence, I've been bullied and I've suffered verbal and even physical abuse but not once have the hospital staff involved been held accountable for their actions.

I used to believe that the NHS were here to help us and to care for us however nowadays I feel bullied and controlled by it.

With a condition like APS, our lives are literally in the hands of our specialists/consultants and I'm continually stunned at how little input we are allowed to have in our care and treatment.

That's if we can even get our specialists/consultants to recognise that we actually have APS in the first place!

As patients we have so little power or control over our own bodies and this is SO wrong!

Our specialists should be there to guide us and to support us through the treatment we need. We should be able to have a two way dialogue with specialists/consultants, regarding our bodies and our treatment, not be forced into taking medications we're not happy with, or even worse be completely dismissed by them and told its all in our heads!

I wish there was a way we could join forces together as patients, in order to try and eradicate the bullying and dismissive treatment we've been receiving.

A singular complaint from one patient has little weight however if hundreds, or even thousands of patients joined forces, surely together we would have a chance to change the way we are being treated by the NHS? 🤔

[lupus-support1 Administrator in reply to leakeadea]

This was one of the reasons I started LUpus Patients Understanding & Support (LUPUS) 18 years ago to provide free information & psychological support. It's the latter which is missing in many cases. Not only is it a trauma, physically, whether lupus, APS or any autoimmune disease, there is the additional trauma of being dismissed by the very people whom we have gone to for help. This is one of the reasons that makes Dr Hughes so wonderful. I "found" him after my parents made me go to 6 specialists - he was the 6th and 18 months later, I had a diagnosis. Thus, when you read his blog, Dr Hughes always asks the question: What is the patient trying to tell or teach us? This goes to the core of being a wonderful physician, which he is, as well as the foremost authority on SLE. How many doctors have a syndrome named after them? How many are still alive? Dr Graham RV Hughes has been given international awards, but not one from the UK! He should have been knighted or elevated to the House of Lords!

Here ends my rant!

It takes humility to say, I don't know but I may know someone who does or who will get you where you need to be. You have the right to be seen by a consultant, especially if your appointment is every 18 months, as it is for SLE!

Fund raising is often associated with charities and non-profits, but I don't raise money & often have to pay for hosting etc. What is usually missing, is the psychological, for which training is necessary. The point is that ordinary patients need psychological support and should be entitled to have this important part of their treatment. Feeling they are not alone, is very important.

My door is open to anyone, whether they have SLE, APS/Hughes or any medical condition.

With good wishes,

Ros

[leakeadea in reply to lupus-support1]

Ros, you are an amazing lady, so kind and so caring, I would say that you should be eligible for an award for the selfless work you do!

You're right that Professor Hughes deserves to be properly awarded for all he does, he really does deserve to be knighted!

What I don't understand is why doctors/specialists who have trained under or worked with him, don't seem to have his caring and humble disposition?!😕

[lupus-support1 Administrator in reply to leakeadea]

Thank you! Some people, not just doctors, need to be seen as omnipotent! If they don't know, the patient must be wrong!

In your situation, you can try PALS or the equivalent at your hospital! I have known woman without a diagnosis for decades!

WE have to have the capacity to say to ourselves that we deserve better treatment!

With good wishes,

Ros

[MaryF Administrator in reply to lupus-support1]

I certainly brought about change in my area! Best wishes. MaryF

[leakeadea in reply to lupus-support1]

You're absolutely right, we do deserve much better treatment!

Why does becoming unwell seem to mean that we are no longer treated with respect by our doctors/consultants/specialists!

I am not a doctor or a consultant but I am a respectable person.

Prior to becoming so unwell, I ran my own business and I travelled all over the world. My clients included the BBC, Rolls Royce, Chelsea Football Club, Hilton Hotels, The Dorchester, the Cafe Royal and even the Royal Family, to name a few.

Now that I'm disabled and very unwell and had to give up my business, I'm being spoken to like I'm a peice of dirt on the consultants shoe, why do I now deserve so little respect, simply because my body has failed me?!!

The CQC are following my complaint with St Thomas Hospital because they are appalled by the treatment I have received and I'm still receiving via the Thrombosis Team. I spoke to a lovely lady from the CQC today and she too was so shocked and is contacting the Governance department because she says they should be helping me with my complaint, by providing someone to write the details of my complaint for me, so I don't keep causing myself pain by trying to write and type.

Let's hope that this may result in my being treated with a little more respect. 🤞

[lupus-support1 Administrator in reply to leakeadea]

Please let me know how you get on because your story will inspire others not to make a report regarding this important topic!

Ros

[leakeadea in reply to lupus-support1]

I will do. Once again thank you for your kind understanding and support! 😘

[MrsMouseSJ]

Ah, I'm always so happy when you post the link to Professor Hughes' latest blog - were I up to it, I would do a little dance!

[Wittycjt]

Thank you, Cindy