Medical and Travel Expenses
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Hi, I am Rachael. I am a 30 year old woman who has been suffering with a very rare disease for almost four years now.
First, I would like to say that it took a lot of consideration for me to decide to set up this campaign. I understand how it could be difficult to see why, with the luxury the UK has of the NHS, I would need any sort of financial help. I hope to lay out carefully the facts and to show why having such a rare disease has cost me thousands and is becoming very difficult to manage and afford.
I developed two other illnesses, angiodema and urticaria over six years ago. They were very difficult to get diagnosed but I managed to maintain these conditions to a point where I could work full time reliably and live a relatively normal life. Four years ago this January, I began struggling with severe pain around my throat and behind my nose. I had at least six trips to a&e by ambulance through choking on solid food. To cut a long story short, as I had anxiety in the past, the hospital dismissed my issues as "globus hystericus" another term for being so anxious a person has the sensation of choking. They did not consider the fact that the ambulance attendants had on these occasions helped me dislodge large lumps from my throat, after an investigation of the particular hospital there were flaws with the system of notes being kept accurately and that information was not being passed on. No physical examinations were carried out to check whether I actually was experiencing physical symptoms. I spent six months of that year in a psychiatric unit and after being on massive doses of anti anxiety drugs to the point I had no awareness of where I was, the problem persisted. During my stay there I also began losing blood from my bowel and my consultant became concerned that something physical was being missed. I tried to approach my GP, but so many medical professionals had dismissed me as having a purely mental illness he did not want to refer me to anyone at the hospital. I decided I had to be sure that this was actually a mental illness so I took it upon myself to book in privately to see an ENT doctor. At the first consultation he found large lesions in the back of my nose, a lot of swelling and inflammation and what looked like a growth. I was sent for an urgent CT scan as at that time he believed I may have had a tumour from the way it presented. It was a frightening time. I had further biopsies and luckily it was not cancerous, but there were large lesions with a huge amount of inflammatory cells in them that were trying to heal which were (for want of a better word) crusting over. The crust was not bonding to the skin, as it grew in layers it would drop into my windpipe causing the choking. This would happen daily and still does to this day. I have attended hospitals all over the country. Waiting lists for the NHS are six months a time at the least in a lot of the specialist areas I need, and when I attended for the most part the consultants had never seen anything like it and usually discharged me back to my GP. I found out not long after the biopsies of my nose (of which I have now had several) that a similar issue is happening with my bowel. There is consistent bleeding daily and biopsies show lesions and inflammation in my bowel too. I found myself being sent to such a variety of doctors all over the UK and it was becoming a very frustrating and disheartening cycle. There are just not enough specialists who deal with this sort of illness. I struck it lucky two years ago when I discovered a doctor online who dealt with inflammatory and systemic diseases. I had to go to see this person on a private basis which again was very costly. But there was hope. I got refered to one of her NHS collagues in London which is the other end of the country for me. After further investigations it has been narrowed down to me having an immunobullous condition. Due to the serious nature of my illness and the position of the lesions on the wall to my brain I was put on azathioprine and a high dose of prednisolone quickly. This alleviated some of the external lesions I had started seeing on my body and minorly reduced my bleeding. I could not stay on the dose long term however, and once the steroids were reduced the bleeding returned. I am currently seeing my symptoms worsen. I recently went to another doctor, after the lady who prescribed me the azathioprine and prednisolone could not narrow the disease down further than it being either mucous membrane pemphigoid or pemphigus vulgaris. The reason she could not pin point the disease is down to the fact I had already started treatment and it was affecting the comparison biopsies she needed to do between healthy and affected tissue. It is too dangerous for me to stop the medication so I am currently stuck in limbo. With my symptoms increasing I need to get them treated properly as quickly as possible, as the morbidity for these diseases without proper treatment is high specifically in ones presenting in the locality that mine are. The new doctor she referred me to was a terrible series of events. They gave me the wrong brain scan results (of someone in her 60's) and have refused to touch any of my medication. This now leaves me discharged from the prescribing doctor, yet no one else will touch my medication due to the uncertainty surrounding my condition. I do not have anyone overseeing my treatment or helping me with pain management. The nose lesions have began causing me serious migraine type symptoms. I have been going blind in one eye and being violently sick with any slight movement of my head or exposure to light. There are many days in the week where I need help being carried to the toilet as I am unable to walk with pain. I need pain management as quickly as possible as it is becoming unbearable. I am still after four years on a liquid diet due to complications with swallowing. As I said before I am only 30 years old and to live like this in so much pain was something I had never considered would be my life. I am completely isolated and mostly housebound now due to my illness. I have tried extremely hard to keep raising funds from home when I can to fund my hospital trips and appointments, but I am increasingly getting in debt from the cost. I have attended London hospitals over 15 times and each trip costs almost £200 with petrol, tolls and parking. From that alone I am finding it more and more difficult to afford to get to see specialists. The questions "why don't you go somewhere closer?" would be one I would ask if I was reading this, so I can simply explain that no one anywhere near my home deals with these specific diseases, at least not one presenting in the way mine does. I have not had a single doctor tell me they have seen anything specifically like this before in the places my disease is active but the biopsies have back up my diagnosis. As I have seen every immunologist, dermatologist, oral maxillofacial surgeon and a whole host of other specialists in my area it is now at the point where they tell my GP they have nothing further to offer to help me. This is the reason for travelling so far.
The reason I have set up this go fund me, is to hopefully raise some money towards an appointment with a doctor who is able to modify my medication. This has to be someone with experience in the field of immunobullous disease. I am currently looking for a consultant with experience in immunobullous disease and ENT. I came to this total of £700 as it would allow up to £500 for an appointment and £200 for travel which is a reasonable average cost for appointments within this field. Any thing I receive would be massively appreciated, I realise this total is extremely high and I don't have any expectations. I hope to be in a position where I can work more to be free of some of the debt that this illness has caused me. I am in around £2500 of debt today over two accounts. I hope to try to see the doctor who prescribed my medication again in future, but the waiting list is long and if she says what she said before she discharged me, that she also has no other suggestions to offer, I will be stuck without anyone overseeing the powerful and harsh drugs I am currently on and I have no one to adjust them as and when a major flare up happens. I have been given tramadol in high doses for the pain but this is no longer touching it at all. I need help and I need it fast. I am lucky to get one afternoon a week where I can walk around and cram some work in and then once again I am back to struggling with this nightmare of pain. I have developed other illnesses from this too including generalised epilepsy, supraventricular tachycardia, graves disease, rheumatoid arthritis, osteoporosis, iron deficiency and vitamin D deficiency to name a few.
As a side note I am currently in the middle of two complaints procedures trying to get answers as to how I can end up with no consultant with such a serious illness, but it is a lengthy process and the hospitals have battened down the hatches so to speak, which has led me to speaking to my MP and having to go to the ombudsman as the next step. All of this is very stressful and draining, it is energy I just feel I don't have at the moment, although I am pursuing it as best I can to try to get somewhere.
I am not a person who wants to bash the NHS. I want to make that perfectly clear. My mum has worked for 40 years as an NHS nurse and I have total respect and admiration for the job NHS workers do under their circumstances. I just know from experience that there is a severe shortage of knowledge in the rare disease field and for me it has been nigh on impossible to attain a consultant to oversee my care and treatment. I have done a lot of my own research into my type of condition and I have new suggestions to offer a doctor once I can hopefully get another consultantation whether that be through the NHS or privately if it comes to that. The only issue I have is the finacial strain this is putting on me. I am not usually a person to ask for donations, and I totally understand if anyone disagrees with this campaign and does not wish to be involved. All I ask is to consider the facts and if you do have anything to spare to help it would be appreciated more than I can say in words.
Thank you for reading.
If you want any information about my illness and other rare diseases here are a couple of links I have found which may help gain more understanding.
http://www.aafp.org/afp/2002/0501/p1861.html
https://rarediseases.org/rare-diseases/mucous-membrane-pemphigoid/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586416/
http://www.medscape.com/viewarticle/470164
First, I would like to say that it took a lot of consideration for me to decide to set up this campaign. I understand how it could be difficult to see why, with the luxury the UK has of the NHS, I would need any sort of financial help. I hope to lay out carefully the facts and to show why having such a rare disease has cost me thousands and is becoming very difficult to manage and afford.
I developed two other illnesses, angiodema and urticaria over six years ago. They were very difficult to get diagnosed but I managed to maintain these conditions to a point where I could work full time reliably and live a relatively normal life. Four years ago this January, I began struggling with severe pain around my throat and behind my nose. I had at least six trips to a&e by ambulance through choking on solid food. To cut a long story short, as I had anxiety in the past, the hospital dismissed my issues as "globus hystericus" another term for being so anxious a person has the sensation of choking. They did not consider the fact that the ambulance attendants had on these occasions helped me dislodge large lumps from my throat, after an investigation of the particular hospital there were flaws with the system of notes being kept accurately and that information was not being passed on. No physical examinations were carried out to check whether I actually was experiencing physical symptoms. I spent six months of that year in a psychiatric unit and after being on massive doses of anti anxiety drugs to the point I had no awareness of where I was, the problem persisted. During my stay there I also began losing blood from my bowel and my consultant became concerned that something physical was being missed. I tried to approach my GP, but so many medical professionals had dismissed me as having a purely mental illness he did not want to refer me to anyone at the hospital. I decided I had to be sure that this was actually a mental illness so I took it upon myself to book in privately to see an ENT doctor. At the first consultation he found large lesions in the back of my nose, a lot of swelling and inflammation and what looked like a growth. I was sent for an urgent CT scan as at that time he believed I may have had a tumour from the way it presented. It was a frightening time. I had further biopsies and luckily it was not cancerous, but there were large lesions with a huge amount of inflammatory cells in them that were trying to heal which were (for want of a better word) crusting over. The crust was not bonding to the skin, as it grew in layers it would drop into my windpipe causing the choking. This would happen daily and still does to this day. I have attended hospitals all over the country. Waiting lists for the NHS are six months a time at the least in a lot of the specialist areas I need, and when I attended for the most part the consultants had never seen anything like it and usually discharged me back to my GP. I found out not long after the biopsies of my nose (of which I have now had several) that a similar issue is happening with my bowel. There is consistent bleeding daily and biopsies show lesions and inflammation in my bowel too. I found myself being sent to such a variety of doctors all over the UK and it was becoming a very frustrating and disheartening cycle. There are just not enough specialists who deal with this sort of illness. I struck it lucky two years ago when I discovered a doctor online who dealt with inflammatory and systemic diseases. I had to go to see this person on a private basis which again was very costly. But there was hope. I got refered to one of her NHS collagues in London which is the other end of the country for me. After further investigations it has been narrowed down to me having an immunobullous condition. Due to the serious nature of my illness and the position of the lesions on the wall to my brain I was put on azathioprine and a high dose of prednisolone quickly. This alleviated some of the external lesions I had started seeing on my body and minorly reduced my bleeding. I could not stay on the dose long term however, and once the steroids were reduced the bleeding returned. I am currently seeing my symptoms worsen. I recently went to another doctor, after the lady who prescribed me the azathioprine and prednisolone could not narrow the disease down further than it being either mucous membrane pemphigoid or pemphigus vulgaris. The reason she could not pin point the disease is down to the fact I had already started treatment and it was affecting the comparison biopsies she needed to do between healthy and affected tissue. It is too dangerous for me to stop the medication so I am currently stuck in limbo. With my symptoms increasing I need to get them treated properly as quickly as possible, as the morbidity for these diseases without proper treatment is high specifically in ones presenting in the locality that mine are. The new doctor she referred me to was a terrible series of events. They gave me the wrong brain scan results (of someone in her 60's) and have refused to touch any of my medication. This now leaves me discharged from the prescribing doctor, yet no one else will touch my medication due to the uncertainty surrounding my condition. I do not have anyone overseeing my treatment or helping me with pain management. The nose lesions have began causing me serious migraine type symptoms. I have been going blind in one eye and being violently sick with any slight movement of my head or exposure to light. There are many days in the week where I need help being carried to the toilet as I am unable to walk with pain. I need pain management as quickly as possible as it is becoming unbearable. I am still after four years on a liquid diet due to complications with swallowing. As I said before I am only 30 years old and to live like this in so much pain was something I had never considered would be my life. I am completely isolated and mostly housebound now due to my illness. I have tried extremely hard to keep raising funds from home when I can to fund my hospital trips and appointments, but I am increasingly getting in debt from the cost. I have attended London hospitals over 15 times and each trip costs almost £200 with petrol, tolls and parking. From that alone I am finding it more and more difficult to afford to get to see specialists. The questions "why don't you go somewhere closer?" would be one I would ask if I was reading this, so I can simply explain that no one anywhere near my home deals with these specific diseases, at least not one presenting in the way mine does. I have not had a single doctor tell me they have seen anything specifically like this before in the places my disease is active but the biopsies have back up my diagnosis. As I have seen every immunologist, dermatologist, oral maxillofacial surgeon and a whole host of other specialists in my area it is now at the point where they tell my GP they have nothing further to offer to help me. This is the reason for travelling so far.
The reason I have set up this go fund me, is to hopefully raise some money towards an appointment with a doctor who is able to modify my medication. This has to be someone with experience in the field of immunobullous disease. I am currently looking for a consultant with experience in immunobullous disease and ENT. I came to this total of £700 as it would allow up to £500 for an appointment and £200 for travel which is a reasonable average cost for appointments within this field. Any thing I receive would be massively appreciated, I realise this total is extremely high and I don't have any expectations. I hope to be in a position where I can work more to be free of some of the debt that this illness has caused me. I am in around £2500 of debt today over two accounts. I hope to try to see the doctor who prescribed my medication again in future, but the waiting list is long and if she says what she said before she discharged me, that she also has no other suggestions to offer, I will be stuck without anyone overseeing the powerful and harsh drugs I am currently on and I have no one to adjust them as and when a major flare up happens. I have been given tramadol in high doses for the pain but this is no longer touching it at all. I need help and I need it fast. I am lucky to get one afternoon a week where I can walk around and cram some work in and then once again I am back to struggling with this nightmare of pain. I have developed other illnesses from this too including generalised epilepsy, supraventricular tachycardia, graves disease, rheumatoid arthritis, osteoporosis, iron deficiency and vitamin D deficiency to name a few.
As a side note I am currently in the middle of two complaints procedures trying to get answers as to how I can end up with no consultant with such a serious illness, but it is a lengthy process and the hospitals have battened down the hatches so to speak, which has led me to speaking to my MP and having to go to the ombudsman as the next step. All of this is very stressful and draining, it is energy I just feel I don't have at the moment, although I am pursuing it as best I can to try to get somewhere.
I am not a person who wants to bash the NHS. I want to make that perfectly clear. My mum has worked for 40 years as an NHS nurse and I have total respect and admiration for the job NHS workers do under their circumstances. I just know from experience that there is a severe shortage of knowledge in the rare disease field and for me it has been nigh on impossible to attain a consultant to oversee my care and treatment. I have done a lot of my own research into my type of condition and I have new suggestions to offer a doctor once I can hopefully get another consultantation whether that be through the NHS or privately if it comes to that. The only issue I have is the finacial strain this is putting on me. I am not usually a person to ask for donations, and I totally understand if anyone disagrees with this campaign and does not wish to be involved. All I ask is to consider the facts and if you do have anything to spare to help it would be appreciated more than I can say in words.
Thank you for reading.
If you want any information about my illness and other rare diseases here are a couple of links I have found which may help gain more understanding.
http://www.aafp.org/afp/2002/0501/p1861.html
https://rarediseases.org/rare-diseases/mucous-membrane-pemphigoid/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586416/
http://www.medscape.com/viewarticle/470164
Organizer
Rachael Huckle
Organizer
