CROHNS v BEHCETS, ANDREW's 63 YEAR BATTLE. UK to USA MEDICAL
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Hello and Good Day!
Andrew 63, has lived with severe, often debilitating health conditions since birth—Crohn’s disease and the rare Behçet’s disease—misdiagnosed for over 50 years. Despite multiple strokes, a heart attack, and ongoing complications, he is determined to seek advanced medical evaluation in the USA, where both conditions are recognised to overlap. This may require specialist air travel. He has secured donated luxury safaris from a US organisation to auction for fundraising and aims to raise awareness of these “silent diseases,” support related charities, and secure stress-free housing to aid his health. He is asking for support, connections, and advocacy to help make this journey happen.
So please donate now and make it happen!
Thank you for any kind offers of support that can be given including items for auction. event arranging, anything as to look at the bigger picture and to make that postive difference of ideas as to make it happen. I have now added Tesco Community Champion List and Asda if any more let me know.
I have emails for foundations and organisations all form filling if any one can complete including Stoke City.
Also any offers of Accommodation in the US, Transport in the US and anything else that may help in the US too will be much appreciated.
Further information, details and thanks and gratitude too ! Will now follow ! Please read at your leisure !
This isvmore of a blog and I am hoping to get one sorted, with some help
****A very important update and verified by Go Fund Me a donation of Luxury Safari Trips by a U.S.A Organisation whom supports non profit charity events. At the moment the example trips include Argentina and New Zealand and South Africa There will have to be a minium bid and after that the winner will take an amazing trip. The actual value are from over 10000 to 28000 Dollars and a commencement of minimum bids from 1295 to 2500 dollars. Of course these will be changed to UK sterling rates. Silent Auction may be a best solution. But as this is hot of the press more information will be given. If anyone has anymore ideas or who could lead on this please let me know. As there are professional organisations who can also undertake this operation too ! We will see.****
As you may well see behind the scenes I am dealing with a lot and been careful as to pace myself and rest too and do as I am told. As on some matters only I can complete.
So anyone got an a penthouse, small bungalow, luxury lodge etc let me know, a bit of a humour thrown in there to. Yeh this is really my real priority and number one task with in the mix.
Warning it is long but nothing to be expected after 63 years and with the wrong diagnosis for 52 years, labelled and boxed. But all positively moves on. Also it is now clear at the levels involved and what I am and have endured, But it is fact
One thing this page as and hopefully commencing is postive action, challenge and change. Bench marked by some movements and by some sitting up to hear the awareness but hopefully to listen. Which is a commencement, it is clear to see on this score that the page is being looked at due to my expereinces and impacts on what can be a positive despite all the negatives happening in the mix. It will, some how will sort like most things in life and each day at a time move on ! As there are so many things in play including varied forms of politics .! This situation is no fantasy, could of been if i hadn't had the different support in place!
The USA medical visit is the goal and to see what the medics/professionally say, on the situation with all the facts available on Crohns v Behcets. I have recently been informed that I am rare and unique, I imagine this now will unravel on the postive in the rapid change with the restructure in the management of my medical care and has now already commenced. Just that one step and it as commenced by dear friends who have donated without question as they naturally just do it as they have been on this journey, seen it and done it all when necessary. Obviously they remain on this journey, with it all. As well as other dear close family and friends. Yo have to be in it to see it and even one week out of it, like politics, is a long time to be out of it. One week is a long time, as so much can happen and that's a sure
I need to eradicate all stress and especially having five years of this with a Housing Organisation. As last Friday during the early hours i endured at this point yet another bad and challenging stress reaction. Yet thoughts all round were of a 4th stroke and i sought immediate attention. As you will see my physical conditions cannot tolerate stress and I have no control of any impacts, which may include later happenings. Also remaining on steriods as to help mainly to robust the left side weakness caused by the last stroke which was only approx 5 weeks ago. Once again those known are aware of this matter and hence why does it continue openingly knowingly complete actions? knowingly it will have it impacts on me, brazen at that. In any one's book it is abuse and in many forms. Family and Friends once again stood to the fore and unselfishly assisted in many ways than one. This is despite having their own matters and situations to deal with. Hence I'm getting through and moving forward. Much Appreciated and especially to the one I who called as to inform and so they could update others, as well and where deemed necessary. Yes impacts effects others too and then commence what needs to be done. Also concern is created too and now that I am very high risk of mortality. This is reality as some can look and still think its not true, as you can look so well. They can also dismiss that how you look as I though I haven't had a heart attack, cardic arrest and 3 full Strokes now. Now 3 sperate parts of the brain. The area also swelled too, and there is damage.
Positives are that I still have my intelligence. I get praised for this and attitude to help, hence its difficult when my intelligence is blatantly insulted and also the denial by some, for some reason it can only be on their agenda why.
My name is gain is Andrew and I am on Go Fund Me as this is my story and it is time to rise from the silence of the on going battlies and the challenges of Crohns/Behcets ! I
FOR THOSE OF YOU WHO HAVE HEARD OF BEHCETS MAY BE AWARE THERE ARE ONLY 600 TO 900 PEOPLE IN THE UK WHO HAVE THE CONDITION . WITH ONLY 3 EXCELLENCE CENTRES IN THE UK. BIRMINGHAM, LIVERPOOL AND LONDON.
My point is be a ware and be educated on matters. Dont let the affects of human nature thoughts takeover just because you don't understand, do something positive about it. Don't make assumptions or unwelcome thoughts as to then say to the person what you think and is factual and is not leading to defensive mechanisms kicking in and wondering why the person is like that. Mainly because the other person is way of the mark and the person with the condition feels alone again and miles apart from the person whom stated their incorrect thought. Whilst everyone can't fully totally or possibly understand, as the patient knows, a patient will surely let you know or help if you ask. Better than the demoralising etc and then has to rebuild and start again. Manny sometimes over explainable or proving theirs elves. What a sad state of affairs and it is key to all concerned that communication and wanting to know can then build on relationships. Do folk really believe that some one wishes to be defined with these conditions. They want to feel that they are person everyone knows you are and what you are ......the person or those knowingly commit acts of stress etc in all forms and some other acts, I have my own thoughts what they should do.
Actually born with chronic diahorea and having all my teeth out at the age of 8. Are just a few examples as there is a list and memoth amout of ailments and conditions. Also a significant amount of medication.
Helping my journey after 63 years and still counting, it can only but help the awareness and profiling and raising the journey for both patients and medics. Yes medics struggle and continue to do so with the diseases. They say in the UK you can't have both, hence another battle for the medics and also as for my journey progresses. The UK say no, but in the USA there are actually patients diagnosed with both conditions. I am informed mine does over lap and very borderlines.But UK say you cant have both! Also Behcets can mimic Crohns.
I know it is extremely challenging for some all round and I acknowledge that. Please remember only so much is known about some of these conditions over recent years.Behcets there is still only a limited amount known. That is why I state after many investigations in Stoke for over 50 years just a labelled and boxed!!.
CEO OF HOUSING ASSOCIATION EMAILED Link - IN SITU WITH BOTH PROPERTIES
Complaints Dept Housing Association
Now Both Properties. Link Sent
Stoke City Council CEO, Corporate Complaints & Housing
Housing Ombudsman Both Properties - Awaiting a caseworker for two years due to work load. Link Sent
Staffordshire University Link Sent
Union and Legal Services Link Sent
Staffordshire Moorlands Council & Leader Link Sent
Karen Bradley MP Link Sent
David Williams MP.Link Sent
Wes Streely Health Secretary Link Sent
DWP
Royal Stoke Hospital Link Sent
NHS Link Sent
Leeds Hospitals Link Sent
Royal Derby Hospitals Link Sent
Bechet Excellence Centre, Birmingham
Oral & Dentistry Hospital, Birmingham
Haywood Hospital - Place of Birth. Link Sent
Staffordshire Sight Loss Link Sent
Citizen Advice Beaureau Link Sent.
Other organisations across UK, USA, Europe, Middle East etc Link sent as to seek Support.
I now think after the list above as it has got bigger and it may get bigger for awareness to
Support is being give by Gofundme by template measures they are giving on emails and see the political challenges that I am facing too! They have varied a exciting donation too by Charity Safarias in the U.S.A. This will commence hopefully soon and more details will be given. Yes I am still open to further support and varied donations or a way of completing a act or task a donations ...always simpley Google. Thanks for that.
It remains although in my state of health and even gives me the strength, it gives me more determination to carry on and postively move forward and beyond
In my career, yes I had a career and dedicated and worked long hours due to the nature and sector of the industry. Profile recognition in many roles and the rewards due to either a individual or as a team and most importantly my teams getting the support and recognition. For which they have rightly deserved on some what have been highly demanding and highly political.
But with these conditions and the impacts endured. Its important to keep some type of humour and normality despite knowing how nasty the condition and delibitating it can be. As you don't want a load of sympathy or mishog faces around you, it's bad enough without that :) Also it heartens those who truly know you and care. As they will say its good to see your keeping your humour.
Patients want or would like empathy, true understanding, true recognition, Various Help and Various Support, and you are doing well. I think people forget this is a True For Life Endurance Test but we cannot control ignorance and can still be a big issue for patients. Everyone's Condition may be under one of the umbrelkas but remains individual to the individual
It is obvious I cannot complete my dream on my own. Fingers Crossed.
Various have contacted me and foundations, but in todays world forms are needed to be completed etc. I want to do this correctly bank account and admin etc. I do understand everyone has their own to contend with in this world today and it is only if thought or time can be given on the way forward. Thanks
I am also requesting if there is a organisation out there in a positive way as to help and support me as to donate my body to medical sciences because hopefully this can only help for the future generations in getting answers to my many conditions; for others and for generations to come. Especially when little is known about the conditions.
I'm wondering where the Old Silk Road genetic DNA comes from, i.e country, gender, travel etc all interesting and intriguing or if some one does have any information.
It is all much appreciated!
.....
My main point is that the USA you can have both conditions. In the UK it is not viable. Hence as to fund a visit to the USA for thoughts and opinions on these condition and any possibilities that I have on moving forward. Also to meet people whom do have both. Also aa to help the charities involved. Plus having a residence that I can actually live and the support as required. I have positively stayed independent as the challenges have risen including where I am fine for me one day and later i can be in ar1e due to the sudden impacts, for which I do understand human beings try to make sense of it all and can put there own spin or denial with it. All so difficult and
Before I commence below, I would like to take this opportunity to thank Mr Geoff Burrows for his tireless, unwaving support and his time during which was very challenging and distressing. Also to the rest of the team whom had a major input. Geoff his the father of the late Rugby Player Rob Burrows, whom showed great courage has we all know and it as to be said a credit to them all! Thank You! Stay Strong.
A sincere thanks also to GMB Yorkshire & N East Branch.
Unionline
Commencement with the GMB Midlands Branch
Personal Thanks So Far for all their involvement and support
Charity Safari, U.S.A
Aydie .. my bro and do I need to say more and our journey together through life and as everyone as the trials and tribulations but we battle on to the battle. If you think I'm bonkers you haven't met him...he'd be Lord Total Leet .
Beth... Stoke will be a poorer place without you. Such a shame and what an amazing support you have been including with the help with the Housing Association. But now have made unstainable of putting the service charge and utilities up by 100% e.g £200 per month. Says it all but I waa so fortunate to meet and have her as by going into battle partner. :) All the Best Wishes.
Andy.....Thanks for your continued support and being a good friend as to try and make things easier and trying to understand the conditions.
Greg - Amaxing true, supportive and great friend, throughout life and to this end! What can I say..
Sean - Thanks for what you have done and much appreciated..
George for all is great help in the past!
Karen, Mandy, Jackie and Jo and as Always there, helpful and supportive and not just now but over the years
Special thought of my Aunt who will be always thinking in the background.
Dawn - Keeps Strong and to Smile as Always....Keep that humour going.
Mr D & Ms K - Always being there and with the Humour too
Pat - Amazing as Always and Dear to My Heart, Special Friend.
Linda Parsnip ! Thank you so much for being and showing in being a dear special friend and support always. But laughs too!
Sarah Thanks for all the recent info and for giving support and all the chats putting the world to rights for hours.....hope everything keeps going well.
Skip, Mary & Jordan yet again nearly life long friends and helped and being there many a time.
H.R.H Princess Leet Faye and Leet Family for been bonkers as me and the many laughs as to keep going, as uve done for years just like everyone else ! Keep it going and the Support
Dear Amazing Friends of School Close
Thanks for all the help and support you gave me and smiles, the chats etc Keep Smiling and stay intouch too!
Alison ! Queen Leet and knows what 5pm Stands For...Proud Mother and Grandmother.....thanks for ur support when needed and the many a laugh we shared...some just bonkers !
Note
Thank you and heartfelt appreciation who have helped, supported unselfishly throughout periods of challenges during this journey in my life. Without them too I may not have been at this point to be ablevto tell the story of my life so far. If they do read this they'll know who they are !
Helping my journey after 63 years and still counting, it can only but help the awareness and profiling and raising the journey for both patients and medics. Yes medics struggle and continue to do so with the diseases.
Let's Move ! Let's Action.
As those of family and very dear friends have shown relentless support especially in tough days and times. But have been their sometimes unselfishly and at times when having their own matters in life to deal with. Sometimes with a laugh or smile and also all the funny situations which lighten the situation. For which I am so grateful and eternally so. The medics and teams will know who they are and again eternal Thanks. Keep going all and always be you and keep carrying on as to keep me sane :)
I have a female cousin who also has her own relentless long journey who's conditions it may relate but in a different manner. Which may obviously be a gene matter for us both. If there is any research this can only but help us, families and others in the future. On the genetic side of matters I thought there would have been testing for my family etc. It is noted how we keep our humour despite all and also the positiveness.
They always say as to get peace and may be the hope of understanding, tell the World your story. Which before I pass, for when no one knows, I have done my best to shout and raise the profile for the future. I'd hate to be young again and journey through life for what as been endured. My heart honestly and transparently goes out to them all whom have to endure too as the conditions can only be managed. Basically it is all auto immune based. The medication is anti supresant drugs including TNF and Steriods.
I know they say as to get someone to complete this type of situation for you. But it's me being me as to rise above and carrying on as I know no different Aged 63 years and battle commenced from Birth but despite all there was no diagnosis until I was 51 in 2012. I thought I found the answer and to accept after all this time. Also as to have peace and carry on, I even smiled on been given the news. This is common too as a relief mechanism. But No! This diagnosis was in a different city and diagnosed at a click of the finger by a Professor form whom I am eternally greatful. It does make you think of a Post Code Lottery, as I was never diagnosed despite following all the tests etc, but it was in a deprived city. But you will see later the diagnosis was rubbished by medics snd individuals who wished to maintain there was nothing wrong with me. Infact the words I'd been gaslighted by some as the story progressed. These conditions should have got easier at this age but trust me again this last 18mths it's been bouncing into one circumstance to another and hit with constant circumstances just like that and then wondering what's just hit me including blacking out whilst driving, hitting a telegraph pole and actually cut out by fireman; eye sight issues shortly after; head pain ache issues in hospital for christmas for 2 weeks and chest pain; investigations for yhe chest; my eyes were hit big time in Feb 2024 with the loss partially and blurryness and receiving Brain Scans; But whilst at the eye clinic in March 2024 I endured a sudden rapid chest pain and I was taken down to the ae and i had a sudden heart attack and cardic arrest. I have also had 3 Strokes but I keep battling and keep coming out of the other side. Awaiting a Gallbladder Removal and a procedure to both kidneys. This is some of the realistic impacts and is only right examples, these are mine, are rightly shown. There are even more conditions mostly inflammatory base. Reality is rightly shown or not but there is no hiding from it.
Behcets is more rare only 600 to a 1000 in the UK and still severely so much still unknown. Interestingly it is known to commence on the Old Silk Road in the 18th century and commenced from Turkey to the Middle East and the Far East. Hence the UK, USA and so on it is so rare ! Hence I would like this to be a start of a legacy, noise not silence as to help mainly the young but for all. If it makes someone's life easier, support etc and helping to battle as it can be a lonely place you v the world when it is difficult for others who can only try and to comprehend or actually trying to understand etc it is difficult when we are only human beings. Just when you think someone actually gets it! they can be miles away, way off from understanding. Which is challenging.
I would actually like to visit the USA and actually get the expereince of another point of you by the medics out
Also retiring early due to ill health puts a person in yet another battle of survival and its impacts due the matters of Goverenment Depts etc and even Tribunals and yet further challenges as we live in the UK in a mainly do it all yourself world. Another reality and this can be very tough and another vision less and silentness no one else can see.
Accommodation tribulations and trials.
This is mine and once again I'm.not the only one.If we do not have enough to contend with there is my continuing terrible expereince that is on going for me, which is now over the last five years and again involves a horrendous experience of a housing organisation, My priority is hence to get out of this situation and it all as actually continued after leaving one of their other properties in the Staffordshire Moorlands. Which waa in a beautiful Parish and such supportive neighbours who witnessed the debarcal of the severe situations endured re the property and yes this alleged Housing Association it was all and remains very shameful and also how I how I continue to be treated and knowingly instigating stress and it is acknowledged. Also knowingly completing actions that can impact my health situation and clear to see. Very Sad! They are in no rush but the longer they have left it the more that comes
The NHS have never acknowledged my situation as I was labelled with a diagnosis as a severe depressive who is prone to viruses. Yeh right. But since 2012 they must have spent 1000s of pounds in investigations, procedures, scans, many consultants and medics and admissions. This is despite requests to various National and Local NHS and Inependent bodies and MPS.
What is interesting and it is very interesting that how many medics and senior staff have not heard of Behcets and mainly in AE..Again this is a reality that never ceases to amaze me.
Please have a look at the latest Cambridge University research that i took part in and available on YouTube. I completed after receiving a email during a recent admission which was a matter of the brain and the area was actually swollen and hence a weakened left side. But i am doing my best to stay independent and getting out of this property and taking breath of fresh air and have peace.
Of course I would like to help with funding for Behcets and Crohns Diease Charities too!
One important matter is that the conditions cannot tolerate stress, there is no control to stop any impacts. Even the environment can impact the situation.
Thank you so much for taking the time and interest and if this only helps to educate a little bit for awareness and recognition that is amazing ❤ Please consider as to forward on the platforms etc.
Various Links and Information as to increase awareness and as to even to help. Look at the celebs who endure these conditions. Just Google it soon comes up with names. You may be well surprised and have a look on images they can be quiet gross but it's facts. Behcets images can be even more gross but this is what people suffer often in silence. Why it needs to be heard and seen its real life and a body of a human being. Well some human beings just show great ignorance and all they care about is me me but hey oh it's life.
My moto's as known by close friends and some now for many years...Take Each Day at a Time....Also one day but if it as not happened if you haven't waited long enough.
Yeh you sure have to have serious intelligence and great patience with these conditions despite the frustrations. As a medic has said that I have because obviously we can have more knowledge than those whom are trying to treat us. Also the frustration of ignorance and non understanding of those who cannot possibly understand and never will, which is oh so sad but their choice !
Best Wishes to you all and if you have learned or now aware of one matter its a positive!
A few interesting links of stories and getting involved with research.
https://crohnsandcolitis.org.uk/get-involved/want-to-get-involved-in-research/take-part-in-research/impact-of-mental-health?_gl=1*1cm1b10*_up*MQ..*_ga*MTYxOTM5NDEzNy4xNzUzNDMzOTQ4*_ga_5THF1XE73Q*czE3NTM0MzM5NDckbzEkZzEkdDE3NTM0MzQzNTAkajYwJGwwJGgw&utm_campaign=1793167_RSCH%20-%20RIO%20August%20Newsletter%202025&utm_medium=email&utm_source=dotdigital&dm_i=4XJ3,12FM7,22CGUJ,50IUI,1
https://crohnsandcolitis.org.uk/get-involved/want-to-get-involved-in-research/take-part-in-research/young-people-s-experiences-with-chronic-pain?_gl=1*1t72zuc*_up*MQ..*_ga*MTYxOTM5NDEzNy4xNzUzNDMzOTQ4*_ga_5THF1XE73Q*czE3NTM0MzM5NDckbzEkZzEkdDE3NTM0MzQ0NjkkajExJGwwJGgw&utm_campaign=1793167_RSCH%20-%20RIO%20August%20Newsletter%202025&utm_medium=email&utm_source=dotdigital&dm_i=4XJ3,12FM7,22CGUJ,50IUI,1
Champion Locator | Asda Foundation https://share.google/UgAFWM5jDYnnaqxHh
Organisator
Andrew Tunstall
Organisator
England