The Knowledge Board:
Addison's Disease
Hi I'm Belinda
I'm your community manager at The Patients Voice. If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
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The purpose of this blog is to help The Patient Connection find out more about Addison’s Disease also known as Hypoadrenocorticism, hypocortisolism or chronic adrenal insufficiency.
The Patient Connection is keen to find out how Addison’s Disease is diagnosed, when you found out you were affected by Addison’s Disease, how is it currently treated. We would like to explore whether you are supported emotionally by your family, friends and the healthcare professionals and if you are working, by your employers.
Please feel free to tell us your story or those of family or friends.
The kinds of things you might like to include would be
- Tell us the story of your diagnosis. Who diagnosed you? When? What symptoms or events prompted your diagnosis of Addison’s Disease, if any?
- What tests were done to establish or confirm your diagnosis?
- What physicians/specialists have you seen in connection with your Addison’s Disease? Who do you see on an on-going basis? Who do you see but occasionally?
-How have you experienced crisis episodes? What kind of physicial and emotional support do you receive from family, friends, physicians, the emergency services?
- Have you had to change your diet and lifestyle routine to cope with the disease?
We look forward to your comments and ideas
Robert | 03/04/2007 17:38:00
My Dad has had Addison`s for 40 years. He recently had a bad `crisis`(only his 2nd or 3rd ever) and was hospitalised for 4 days. His treatment has never been been changed but he was taken off one of his 2 forms of medication and has been nausious for 10 days since returning home. Now he`s been put back on his original medication. Just seems odd to stop and start medication so suddenly.
madeleine | 04/04/2007 20:46:00
i have had addisons since 2004. its been a long hard road even though my doctors said i would return to normal life. i never have. i almost died from addisons because i was going through a horrible crisis and no one could figure it out. its not too common in Oklahoma, USA. ive had many many crisis's throughout the 2 1/2 years ive had addisons. its not something that i would wish apon my worst enemy. i hate living with this. people dont understand what its like to have it bad. they think im a baby or they try to protect me from every little thing. i have a stomach ache and the whole world stops to take care of me. i always have stomach pains, dizziness, and nausious spells. i pray someone on here has had simular symptoms and has figured out what to do to stop them. my life would be a lot easier.
Su | 05/04/2007 13:20:00
After 2yr of going to my Dr with various complaints and my Dr actually accusing me of being a hypocondriac ,in 2001 I was eventually diagnosed with having Primary Addison's Disease. I had to nearly die, befor my condition was diagosed. While I was at work, I felt a little unwell, Light Headed, Nauseous, stomach Cramps, Shaky, hot and cold spells and very confused, I collapsed. The next thing I remember was waking up in hospital,with monitors and drips and an array of wires atatched to bits of my body. This was my first full blown Addison's Crisis. I was very lucky that a Endo Specialist was seeing someone else in emergency when I was brought in, as he recognised the symptoms and suspected what it was (even though he had not seen or had an Addison's patient before in his 30yrs of practice) During the Crisis my Blood Pressure hardly regestered, and had it not been for Dr Kelly's quick thinking I would of gone into coma or worse Died.I was treated with high doses of Hydrocortisone for the first few days and was slowly weaned down to a lower control dose. During this period I underwent so many tests. I felt like a pin cushion. Bloods were taken 5 or 6 times a day, water samples were taken every time I went to the loo. Xrays, you name it, I had test taken for. I was in a side ward for 3 weeks. Medical staff and visitors were robed and masked when they came to see me. I felt so isolated and very down, But at least My problem had a name and I saw light at the end of the tunnel. When I eventually returned home, I was on a number of medications, to see which one worked best. Hydrocortisone, prendestalone, flourocortisone were all tried and for over a year I was on all 3. I now control my Addison's with hydrocortisone at 30/15 doses. At the first signs of infection or illness I increase my dosage to boost my immune system, it helps but does not alway work as I have been in hospital at least 15 times with Pneumonia. Because My Addison's is Adreanal (primary)I have to see my Endo on a regular basis and he also monitors the Rheumatoid Arthritis that sometimes comes along as a little added extra with Addisons.Now I don't mean to get anybody worried, but Addison's can be a very nasty and life threatening illness. In 2002 I was diagnosed as having a chest infection, unfortunatly it was Lung Cancer. I had Adenocarcinoma an had 2/3rds of my right lung removed. Recovery has been long and hard because of the slow healing problems that can arise with Addisons, and more reciently, I tripped and bruised and cut my Big toe on my left foot. I got an infection, (which I stupidly ignored) It developed into gangrene and as a result on Jan 5th 2007 I had my toe amputated. It is now April and it has still not healed. I hope that other members of this forum have better luck than me, though through talking to other members of Addison's Groups, I know there are Addisonians that are a lot worse off than me.Ok thats a little bit of the About Me Spot. In response to Robert's comments. I am sorry to read that you Dad has been hospitalised recently. I do hope he is feeling a lot better now. Is your Dad Primary (adrenal) or Secondary (thyroid) Addison's.I can not understand why they stopped your Dad's medication suddenly. Is your Dad on Steroids. If so, they are not to be stopped suddenly. You have to be weaned off them gradually. It states this on the steroid takers card that your Dad likely has. If he does not have a steroid user card, they can be obtained from your pharmacist and should be carried at all times. Robert, well done on the Supporting of your Dad and his health problems. It can be hard on the family of the sufferers too. There are family suport groups available on the web. Are you U.K or U.S.A based? Response to Madeleine. Hi, I can sympathise and empathise with your problems. A lot of people with Addisons can and do live a perfectly normal life, with little or no problems. Unfortunatly this is not always the case. Addison's is not very common in any country. (1 in 100,000 i read somewhere) Assison's is little understood. There is some research going on in the USA and Canada and some very good forums on USA sites. I wish there was a magic wand or potion that could stop the symptoms, but as yet there isn't. Do you know what type of Addison's you have and what medications are you prescribed. Unless you have to live with the illness every day, most people don't understand and because it is so hard to explain, it gets very frustrating. I can understand the anger you feel. The symptoms you have are pretty familiar among a few Addisonian's. There is no miracle cure. The suport from friends and family helps somewhat, but it can be very draining emotionally wise when you try to put on a happy face, when all you really want is to be left alone. As for the pains etc. take your meds, keep well hydrated at all times and always carry water with you. Addison's sufferers can dehydrate quickly and this can lead to dizzyness and cramps. (When I am dehydrated i feel as if my head is full of cotton wool and i move around as if i am trying to walk in quicksand) If you don't have an emergency injection kit, see your Dr about getting one, and carry it with you always incase of Crisis. Ask your Endo or specialist to do a health curve test to see when your levels are up or down and when the best times it is to take your meds as you may need to take smaller doses of your prescribed meds more frequently or you may need to have your dosage or type of medication reviewed. I hope this helps you a little. My best wishes to you all. Su Please note I am not a Doctor and what I have written is by no means any form of recomended treatment or care. I am only writing this based on my own personal expierience of having and living with Addison's Disease. Please always contact your doctor for proffesional advice and care in your treatment of Addison's Disease. Thanks
Linda | 08/04/2007 19:20:00
Unfortunately like many addison's sufferers I nearly died before I was diagnosed. This could partly be my own fault because I thought I had an heavy cold that was just hanging on and making me throw up and sleep all the time. I quit my job which was a very demanding position because I thought I was worn out through this job so I took another position at my local surgery with less hours. However I was getting more tired and sick my family was supportive but they thought I was balemic and they were fed up with my mood changes. Eventhough this was Christmas time I had a wonderful colour. One of our patients came to the surgery and remarked on how much weight I had lost and how brown I was, she also asked me if I was sick when I told her yes she said I should have an addison's test, but I thought no more of it until I went to work three days after christmas and I couldn't breath very well. This was my first christmas working at the surgery and I didn't want my employers to think I didn't want to work over christmas so that was why I made it to work. My memory was affected and I was really cold and light headed. The doctor at work saw me and he took my blood pressure which was very low and he sent me into hospital. At hospital they thought I was depressed and making myself sick, it was here that I asked for an addison's test which thankfully the young doctor done among many others. While we were waiting for the results I had to have a scan, the doctor there was really horrible to me and said everything was in my head and that they couldn't find anything wrong with me, I was probably in debt and feeling low after the christmas spending. I was too ill to speak up for myself but I would really like to meet that doctor now. The next day the blood test results were back confirming I had addison's and hypothyroidism, I was on the drip, oxygen and high doses of steroids for that week and sent home on hydrocortisone and fludocortisone and thyroxine. I improved slowly, this was six years ago. I still have bad times where I am sick every morning for no reason or I could be out and suddenly I'll throw up. I don't bother going out to socialise that much now. At work everyone is good to me if I am having a bad day they understand, they can often tell just by looking at me. My doctor referred me to an endo last year because the doctor I had been seeing retired and no one took over my case. The new endo I am under is very good and he has changed the times I take my medication and the amount and I am feeling better with it. I cannot thank him enough for his help. My family are very good and helpful because I still get very tired. I am fed up living with addison's but I also understand that this is not the worse thing that could happen to me, I get depressed nowadays and I never say to anyone that I got addison's eventhough I know this is not contagous. I also suffer with arthritis, osteoporosis and I have been a diabetic for three years. I don't feel life can never be normal again but I try to be happy with what I got. Su I hope you make a full recovery and you have given some good advice. Madeleine I understand thoroughly what you are saying and how you are feeling. Robert I would be interested to know how your father has coped with his life with addison's for 40 years. Hope he's feeling better now.
Robert | 11/04/2007 14:18:00
My Dad is much better now thankyou. I couldn`t get much detailed info before now as he was so poorly and it`s just something that my Dad has always had (I`m 43) so I wasn`t very knowlegable about the condition. I`ve since found out that he was taken off Fludrocortisone the moment he was admitted to hospital (i understand that this controls Potassium/ Salt levels). He was still taking Prednisolone. My Dad said that he assumed that they knew what they were doing by changing his medication (you do that when you go into hospital I suppose) and they just give you the tablets they want you to take. After coming home he was still very sick (nausea/sick/no appetite/no energy etc) After several calls from my Mum to the emergency Dr and even 999 on one occasion he was put back on his original medication but a higher dosage. He has gradually improved and is nearly back to normal. He has no more than 6 Crisis` over the last 40 years but this was by far the worst. As far as the effects of this disease on his life he says it`s difficult to say (he said to ask my Mum!) but he seems to have been fit and healthy from an outsiders point of view with few limitations and no obvious side effects.
Linda | 15/04/2007 16:30:00
I am glad your dad feels better robert. sometimes doctors don't seem to listen to whats happening to you, my doctor won't give antibiotics until I have a blood test to show I have an infection, I can be really ill waiting for the results. I am having a bad week this week been sick every morning and not really eating because the smell of food is turning me, but I am really overwieght so that won't hurt me, my family are living on take aways this week, i also feel short of breath while wallking around I'm ok sitting down. I must have got an infection going on and i should increase my hydrocortisone which I have done today because I have work tomorrow and I don't want to feel ill tomorrow if I can help it. My joints are aching, slight pain in my chest and I have been lying on my bed unable to face getting up unitl 10 minutes ago. I am not always at my greatest in the warm weather, it zaps my energy. My endo has decreased my Fludrocortisone to half a tablet a day becasue my blood presseure had gone from low to high, this decrease seems to have worked but its a nuisance cutting a tablet in half in the mornings and sometimes they crumble. Robert do your father swee anyone regarding his addison's or do he control things himself. I hkonw a man who have had it for so many years that he don't see anyone because he can control things himself.
Robert | 17/04/2007 16:32:00
Thankyou Linda. I`m sorry you`re having a rough time at the moment. Apart from the very rare Crisis`that my Dad`s had I believe he just takes his daily medication. He`s never been refered to specialist, which I find surprising. Apart from from when it was first diagnosed I imagine. Maybe they leave it up to him to contact them if needed as it`s so rarely a problem for him. I hope you are soon feeling better and able to get back to cooking!!
Donna | 26/04/2007 12:27:00
Madeleine, I live in Australia and it is not that well known here either. I also have Addisons and was diagnosed in 2003. It has been a really difficult time, with numerous setbacks, but eventually the doctors realised I had an underactive thyroid. With a change of medication and Oroxine, for 99% of the time, I do lead a normal life. It is great to have the freedom to go shopping, without passing out, or vomiting, or even feeling unwell. I suggest you see your doctor and ask them to run more tests, as it shouldnt be that hard to get back to 'normal'. Life will not be the same, but with the right medication (maybe you need smaller doses more often like me) at least you are alive, it is treatable and you have family and friends who have enough love for you that they do drop everything to help. I would suggest seeing another Endo, who understands. Or, like I did, stand up for yourself and demand they do something as something is obviously not right. I wish you the best of luck, and hope that you can find a doctor who will listen. Just keep at them. Good luck.
cathy tia | 26/04/2007 19:51:00
hi my name is cathy i'm 31 yrs old and a mother of a 9 month old miracle child through IVF. My husband is my rock of stability and knows when i'm sick my colour is very brown and i lose concentration. I had cushings disease based in the pituatary for 8 yrs (cyclic) after two brain suregies to remove the tumour it returned so three yrs ago i had both adrenals removed it took nearly 2 yrs to get the right balance of hydrocortisone and fludrocortisone to make me feel semi nornal not that horrible floatry feeling. I am great now but my body has a very fine line if i get a cold i can go into a crisirs so fast. During my prenancy i had 3 full blown ones and was in hos[ital since then i've had 3 more i carry a shot and oral meds and water every where i go an in the summer increase my fludro. This is a great forum, the main thing is to educate the people and comunnity around you i ahave been inn several womans mags and newws papers and i mamnage to runa sucessful business, you just have to know your limits. many thanks cathy tia (new Zealand)
Sandr | 27/04/2007 03:52:00
As with most Addisonians I was sick for a number of years, but 2003 has by far been the worst. It all started about 10 years before this, after being diagnosed as infertile, I suffered depression. This started me on a roller coaster of IVF treatment (which was successful by the way), post natal depression, marriage break up, divorce, more depression. Progressively as the ten years went on, my doctor said I could not handle stress, but I did not know why. I will start with 2003. I had to give up work at the beginning of the year as I could not handle the stress of work, traveling for 2 ½ hours a day to work as well as being a mum and a wife. So my doctor put it down to the depression, increased my medication and I became a lady of leisure, supposedly. Well taking out the work and the travel, I should have had more energy. But as the year progressed I had less and less energy, all I wanted to do was sleep all day, let alone cook tea or do the housework. I would get my son off to school and want to go back to bed for the rest of the day. I could not sleep of a night. I went through phases of vomiting every morning for a month at a time, like morning sickness, yet I knew I could not be pregnant. Then there was the spontaneous diahorhea, head aches (which I have seen numerous specialists about as I have had them since I was 18), shaking constantly, convulsions in my legs, and lack of cognitive thinking, I also lost 8 kg in a month (not that I minded that bit). Twelve months earlier I had an MEA (Microwave Endometrial Ablation) of the Uterus due to my cycles being all over the place. A familiar list of symptoms to most Addisonians. I had been to my local GP so often, saying there was something wrong with me, but I did not know what. But she was really good, and did not give up on me and kept looking. As a side effect of one of the drugs (which we did not ascertain until later) I was on for depression, my prolactin levels were extremely high and they thought I had a prolactinoma, tumor on the pituitary gland. I was referred to my first endocrinologist. He determined, after numerous blood tests, that I didn’t have a prolactinoma as my prolactin levels came back to normal after I stopped taking the medications. He told me that the rest of the symptoms were all in my head. I told him it was not depression as I had been there before and it had never been like this, but I got the “DEPRESSION MANIFESTS IN ALL DIFFERENT WAYS” speech and basically he wiped his hands of me. I was nearly in tears as I was paying my bill at his receptionist, and he came up to me and said there was one test we could do to check for fatigue; sugar and cortisol. Well I went off to pathology, who by this stage knew me by name, and had my test done. BINGO, I had a cortisol level of 8, where the minimum you should have is 150. Totally dissatisfied with my endocrinologist, I went back to my GP and she followed up on the results, she ordered a short synacthen test. Which I failed, after half an hour my cortisol levels had increased to 12 (they are meant to be about 550). At least I failed it properly, so I got the ADDISON’S DIAGNOSIS. So we went back to the endocrinologist and he put me on a maintenance dose, straight off, of 37.5mg per day in two doses of Cortate. He also ordered an ACTH test to be done, in order to see if it was primary or secondary. My husband, who had doubted whether or not it was in my head who by this stage was relieved I had a diagnosis, asked how long it would take to get the Addison’s under control. The endo, quote, unquote, said take two doses a day and in a couple of days you will be fine. Well of course this did not happen, and when it didn’t the world came tumbling in around me and I went into a very unstable depressive state. After seeing my counselor and psychiatrist and my GP to get me through this phase, I decided this endo was second rate and I was going to find someone who knew what they were talking about. Being one of those people who have to know everything about my illnesses, I went computer surfing and found the AADA. I registered for the email list, and became a member, by chance I ended up communicating with the Tasmanian Rep, who I am eternally indebted to, and in her email she mentioned Dr Richard Arnott talking on the disease in Tasmania. I tracked him down (internet white pages) got a referral to him. I rang his secretary and I felt she knew more about the disease than the doctors I had been seeing. I had an appointment for Dec 22, 2003. She had remembered I was not stable yet and knew how serious the disease was, she had a cancellation prior to this, remembered me and I was in there seeing him within 1 ½ weeks. By the time I saw Dr Arnott, I had had a CT scan, 23 pages worth of blood tests at the local pathology, a short synacthen test, thyroid ultrasound, radioactive iodine scan of the thyroid, chest x-rays (as they thought I had pneumonia, as a chest infection took 4 courses of antibiotics to get rid of). I was seeing a psychiatrist for my depression, a physician for my Asthma, A counselor for my depression and my good old GP. Previously I had also seen a gynecologist for my MEA and a neurologist for my migranes. I will never forget the relief that I felt when I saw Dr Arnott. Finally some body took me seriously. I started talking and answering his questions and could not stop. We were in there for an hour and a half. He got all my pathology results (all 23 pages) faxed to him; he ordered antibody tests and rennin tests that I hadn’t already had. Despite us saying we would wait while he saw some one else, while the fax was coming through, he said no it was fine. He told me no wonder I felt like crap, that I had been so sick for so long. He changed my meds to hysone (hydrocortisone), to a higher dose to get my levels up quicker. He also told me to ring him if I wasn’t feeling any better in a week. We were heading off to Queensland in 2 weeks time, which I was apprehensive about, so he wanted things to be getting under control. He gave me a script for dexamethasone for my emergency kit for traveling away and said to have the AADA letter with me. My husband is an Ambulance Paramedic, so he will get the job of the injections. He also checked the medic alert bracelet that I had been told to get by the first endo (he did something right) and he was happy with that. The weight that came off mine and my husbands shoulders when we walked out of his rooms was huge. I felt normal again, like I didn’t have two heads and wasn’t going crazy. I would recommend him to anyone; he is a true expert in his field. I had an MRI on the pituitary gland, everything came up okay, despite a low ACTH level, and my diagnosis is primary Addison’s. The low ACTH has been put down to my asthma medication, apparently as an addisonian when your cortisol levels are low your asthma can get worse. I kept going to GP’s where I use to live, and they just increased my inhaled cortisone. Now I am seeing a physician who specializes in respiratory illnesses and we are trying to get my inhaled cortisone down as low as possible without aggravating the asthma. Dr Arnott said we will just check it (ACTH) every now and then, but as the MRI of the pituitary gland was fine, which he went through with me, it was not the cause. I survived the trip to Queensland, driving from Victoria (despite the 7 and 15 yr olds). I did not need my emergency kit, but I am so glad I was diagnosed before we went. I would not have survived without the cortisone, I had to increase my meds, as advised by Dr Arnott, while we were away to handle the extra activity, heat and stress. We saw him after we got back and he complemented and encouraged me by saying how well I handled the trip, as going away in the past is when I have had my Addison crisis’. I have to see him again in February, so he is keeping a close eye on me while I am getting stable. I have since found out that I am my GP’s only Addison’s patient that she has ever had. My endo said that it is rare for a GP to have more than 1 Addison’s patient in their career. i have now been diagnosed for 31/2 years. It took 2 years to get things stable. I have had 3-4 crisis' before diagnosis that were not picked up as addison's. Since diagnosis I have also been diagnosed with Epilepsy and am checked regularly for hypothyroidism and premature menopause. I am also on fluronf now 50mcg per day as my rennin was high, and I am on 30mg per day of hysone. Hopefully I will get back to work again, this is my goal, but is unlikely at the moment. Chronic illness is extremely hard on our families. My husband finds it very difficult. As I have Addisons, Depression, Epilepsy, Asthma, Chronic Migraines; all together it makes it very hard. So far he has stuck by me. Thanks, Sandra.
Valerie (Pittsburgh, Pa) | 28/04/2007 13:17:00
I was diagnosed with Addison's in the early 1980's, when I was 15. I was sick for several years. Someone diagnosed me with Anorexia Nervosa and had me see a psychiatrist. He questioned me over and over about life, I guess it was too much stress because I went into shock. He believed I was ignoring him and left the room. My mother found me and called for help. Thankfully I was revived an they placed a central intravenous line and placed me in the intensive care unit. I was very ill in the and the doctors told my mother that they had know idea what I had but they believed I was about to die. Fortunately there was a tenacious doctor on my case and he was searching through some medical books late one night and put it all together, (the bronze skin, dark gums, low blood pressure, nausea, vomiting, weight loss, exhaustion, etc.) He immediately started me on IV cortisone and because of him I am here today. As a teenager I was so glad to finally know what was wrong with me and to have people believe I was not making myself sick, taking medication was easy compared to how my life had been. I was hospitalized several times yearly for crisis', and occasionally when my regular doctor was not on call I have been mistreated in emergency rooms. No doctor wants a young patient that is about to crash from low blood pressure telling them what to do. Years later I discovered that I was not alone and contacted The National Adrenal Disease Foundation here in the U.S. I discovered that keeping injectable medication on hand could keep me out of the hospital. I had to ask my doctor for it, but it works great. A couple of years ago I noticed that I was exhausted all the time. I put it off as the weather, raising teenage daughters, and work - I became a registered nurse 4 years ago. My doctor told me I was getting old, so I was on my own as usual. After a couple of months I suggested DHEA supplemenation. To my MD. He was aware of the research on this but had not been recommending it yet. After the lab work showed my medication levels were o.k. (I take 15mg cortef in divided doses and .01 mg florinef) I began DHEA. The first bottle I bought did nothing, then I contacted two pharmacists in my area who have degrees in homeopathic medicine. The made some for me, it is in a 50mg dose and soy-based (some DHEA is yam-based which is not used in the body). It worked wonders, I had energy again.( If anyone is interested their website is www.askrph3.com). Recently I have been experiencing depression, which is new for me. I am seeing a new endocrinologist in May and I'm hoping for some enlightenment. I would prefer trying alternative supplementation before a prescription. Well that is most of my long story. Thanks, Valerie
Sherri 39 (Chico, CA) | 30/09/2007 18:58:00
I call AD the disease that keeps on giving... it's given me Hashimoto's Disease, Premature Ovarian Faliure, Acid Reflux, Diabetes, Low Human Growth Hormone levels and I know that there is more to come.
Addisons Disease is a very insidious Disease. Atleast it was for me. I strated getting sick shortly after my daughter was born in 2000. As each symptom presented itself I just explained it away. Weight loss?? I just had a baby and was dieting. Fatigue? Again, just had a baby. Darkening skin? We were swimming a lot. Muscle aches? I was over 30. Etc. etc. etc. By 2004 I was a mess. I would sleep 10 hours, get up, get the kids off to school and fall asleep on the couch again. I couldn't dry my hair because I couldn't lift my arms over my head. I had horrible aches and pains. I was seeing a chiropracter and she was getting concerned. She sent me to my MD. He diagnosed the AD straight away. The worst part for me was we didn't really know I was isck before we entered the DR. room and we walked out of there with the assurance that they would find a way to make sure I was stil here in 20 years. I was slowly dying and we didn't even know it!!! I take my meds. I have good days and bad days. I have learned to take this easy, not to over work myself. The bad parts?
My youngest daughter has never had a healthy mother. She never got to enjoy a mom who would run in the park with her like my other 2 did.
I now weigh over 200 lbs. Every time I start to work out I get sick.
I never have the energy like I did before. I have to take naps several times a week.
I will never be the person I once was.
I will never have another child like we planned.
The good part...
I AM STILL ALIVE!!!!!!!!
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