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Psoriasis Club is a friendly on-line Forum where people with psoriasis or psoriatic arthritis
can get together and share information, get the latest news, or just chill out with others who understand. It is totally
self funded and we don't rely on drug manufacturers or donations. We are proactive against Spammers,
Trolls, And Cyberbulying and offer a safe friendly atmosphere for our members.
So Who Joins Psoriasis Club?
We have members who have had psoriasis for years and some that are newly diagnosed. Family and friends of those with psoriasis
are also made welcome. You will find some using prescribed treatments and some using the natural approach. There are people who
join but keep a low profile, there are people who just like to help others, and there are some who just like
to escape in the Off Topic Section.
Joining Couldn't Be Easier: If you are a genuine person who would like to meet others who understand,
just hit the Register button and follow the instructions.
Members get more boards and privileges that are not available to guests.
OK So What Is Psoriasis?
Psoriasis is a chronic, autoimmune disease that appears on the skin. It
occurs when the immune system sends out faulty signals that speed up the
growth cycle of skin cells. Psoriasis is not contagious. It commonly
causes red, scaly patches to appear on the skin, although some patients
have no dermatological symptoms. The scaly patches commonly caused by
psoriasis, called psoriatic plaques, are areas of inflammation and
excessive skin production. Skin rapidly accumulates at these sites which
gives it a silvery-white appearance. Plaques frequently occur on the
skin of the elbows and knees, but can affect any area including the
scalp, palms of hands and soles of feet, and genitals. In contrast to
eczema, psoriasis is more likely to be found on the outer side of the
joint.
The disorder is a chronic recurring condition that varies in severity
from minor localized patches to complete body coverage. Fingernails and
toenails are frequently affected (psoriatic nail dystrophy) and can be
seen as an isolated symptom. Psoriasis can also cause inflammation of
the joints, which is known as (psoriatic arthritis). Ten to fifteen
percent of people with psoriasis have psoriatic arthritis.
The cause of psoriasis is not fully understood, but it is believed to
have a genetic component and local psoriatic changes can be triggered by
an injury to the skin known as Koebner phenomenon. Various
environmental factors have been suggested as aggravating to psoriasis
including stress, withdrawal of systemic corticosteroid, excessive
alcohol consumption, and smoking but few have shown statistical
significance. There are many treatments available, but because of its
chronic recurrent nature psoriasis is a challenge to treat. You can find more information
Here!
Got It, So What's The Cure?
Wait Let me stop you there! I'm sorry but there is no cure. There are things that can help you
cope with it but for a cure, you will not find one.
You will always be looking for one, and that is part of the problem with psoriasis There are people who know you will be
desperate to find a cure, and they will tell you exactly what you want to hear in order to get your money. If there is a
cure then a genuine person who has ever suffered with psoriasis would give you the information for free. Most so called cures
are nothing more than a diet and lifestyle change or a very expensive moisturiser. Check out the threads in
Natural Treatments first and save your money.
Great so now what? It's not all bad news, come and join others at Psoriasis Club and talk about it. The best help is from accepting it and talking
with others who understand what you're going through. ask questions read through the threads on here and start claiming
your life back. You should also get yourself an appointment with a dermatologist who will help you find something that can
help you cope with it. What works for some may not work for others
hi all. started my new drug yesterday. cosentyx after stelara had failed. had 2 injections yesterday. 2 injections next monday and so on for 5 weeks. then its one injection per month. feel ok apart from feeling like im getting a cold. will update on my journey
Hi there,
I'm new here - hello!
Wondering if anyone can help.
After I go for a run, +7miles, the psoriasis spots on my back on stomach flare up.
I'm assuming it is from the irritation from the clothing mixed with the sweat from exercising. Does anybody know that the best clothing is for running long distance as a Psoriasis suffer?
Thank you!
mjb
Posted by: Fred - Sat-12-01-2019, 13:01 PM
- Replies (1)
This French study looked at the dermatologist's position and the patient's preoccupations as to psoriasis and pregnancy.
Quote:Background:
While some information on psoriasis impact on pregnancy is available, very little is known on the preoccupations of women afflicted by the disease or on the dermatologists’ (D) positioning as to psoriasis and pregnancy. The “Objectifs Peau” project demonstrated a 4.7% prevalence of psoriasis in women aged 18‐45 years in France.
Objective:
This project sought to further address these issues in view of a targeted action plan.
Methods:
A questionnaire was made available to 361 D of different types.
Results:
Overall, 152 D answered the questionnaire, 50.7% working in private or mixed practice and 49.3% in hospitals, with 63% females (DF) and 37% males (DM). Over the last 3 months, the mean percentage of women of child‐bearing age seen by these D was 28.6%. The main issue addressed by D upon psoriasis diagnosis was the patient's wish to become pregnant in the short‐term (84%), while the compatibility of drug treatment with pregnancy was the issue prioritized by patients (64%). Among DM and DF, 46% and 29% reported having been confronted with an unplanned pregnancy, with their reaction mainly dependent on the treatment taken in 66%. Regarding follow‐up, 26% D declared having shared their decision‐making with gynecologists, while 56% considered the first pregnancy trimester to be the highest risk period. Only 28% D were familiar with existing recommendations, with only 21% of them considering them appropriate.
Conclusion:
Overall, 26.2% of French psoriasis women are of child‐bearing potential, in line with our dataset (28.6%). Only 56% D considered the 1st pregnancy trimester to be the highest risk period, with only one‐third familiar with existing recommendations. The gap between recommendations and actual practices must be addressed through policies that take women's preoccupations better into account.
Posted by: FRP88 - Mon-07-01-2019, 05:36 AM
- Replies (5)
I've been diagnosed with Psoriasis and Psoriatic Arthritis for just under three years.
Started off innocently, and took over a year to actually grab my attention.
Mid 2017 until Mid 2018 - All the first off meds such as Methotrexate etc...
Nothing with any results.
Beginning of 2018 the Plaque growth jumped exponentially.
No decent dermatologists in my country.
Had to find out about biologics on my own.
Went to the US to see a dermatologist. Prices we're absurdly high.
Was able to find Cosentyx marketed as Scapho in India.
Still extremely expensive but much cheaper than Cosentyx from the US.
Planned on starting Cosentyx in October however;
Did a TB test; came back positive;
Turned out i had a mycobacteria not TB.
Currently on isoniazid and wasn't allowed to start Scapho until i had been on isoniazid for atleast two months.
Just had my 5th loading dose of Scapho last week.
Seeing decent results but not as good as some of the posts i had been reading on.
I'm on Scapho without any dermatologic supervision.
My Plaque psoriasis is extreme, Scapho has only cleared around 15%.
Now that loading is over, i want to use it bi- monthly.
Has anyone here ever deterred from the standard dosage?
Been a lurker for sometime now. I’m in my mid twenties and have had psoriasis since I was 12. I’ve gone through the motions with various topicals, with only Enstilar and the protopic ointments being of any use. I only got my hands on these earlier last year, but they’re only help marginally with comfort, but the clearance hasn’t really happened.
Last year I also tried acitretin but this didn’t give much clearance either, so now have been suggested to try Skilarence. The private script I’ve been given however seems to cost around £1300 for a 14 weeks at one of the well known high street pharmacists which is pretty darn steep.
I was wondering if any other UK users of Skilarence had had any luck with getting it cheaper anywhere else?
Posted by: Fred - Tue-01-01-2019, 17:33 PM
- No Replies
This study looked at the Health literacy (HL) strengths and weaknesses in psoriasis patients.
Quote:Background:
Health literacy (HL), the ability to seek, understand and utilize health information, is important for good health. Suboptimal HL has been associated with poorer health outcomes in other chronic conditions, although this has not previously been studied in patients with psoriasis.
Objectives:
The aim of this study was to investigate the HL strengths and weaknesses of a cohort of patients with moderate to severe psoriasis. Another aim was to examine possible associations between patients’ quality of life, their demographic, clinical and self‐management characteristics and dimensions of HL.
Methods:
A cross‐sectional study was conducted. Data were collected from a cohort of patients with psoriasis who had participated in climate helio therapy from 2011‐2016 (N= 825). HL was assessed by the Health Literacy Questionnaire (HLQ). The association between HL domains, demographic, clinical and self‐management variables was analysed using bivariate correlation and a four‐step linear multiple regression model.
Results:
The scores on all HLQ dimensions indicate lower health literacy compared to other populations. The linear regression models showed a significant association between HL, quality of life and self‐management variables, with higher HL predicting higher quality of life, self‐efficacy, and psoriasis knowledge. Sex, educational attainment, age and disease severity had less influence on health literacy.
Conclusions:
Improving HL may be a useful strategy for reducing disparities in self‐management skills for patients with psoriasis. Interventions that aim to reduce disease severity and increase psoriasis knowledge, self‐ efficacy and quality of life may positively increase HL.
So I was put on Fumaderm last January. Sadly it has stopped working and my psoriasis has come back with a Boom!
As a result the doctor is going to put me on a biologic, either Humira or Stelara. I have been asked to choose as they don't favour one over the other.
I was just wondering if anyone could give me advice...
At the mo I am swayed towards Stelara as you only have to take it once every 3 months but would love to hear from someone on either drug!
Posted by: Fred - Wed-19-12-2018, 19:29 PM
- Replies (4)
The Medicines and Healthcare products Regulatory Agency (MHRA) UK are advising anyone using Zudaifu cream stop using it immediately.
Quote:
The MHRA has been working to prevent the further sale of Zudaifu cream and advises anyone who has bought it online to stop using it immediately.
Zudaifu cream is not a licensed medicine and has been marketed in the UK as a “natural” Chinese herbal remedy for the treatment of a range of skin conditions, most commonly eczema, psoriasis and rosacea.
Our analysis of the product found the presence of the steroid clobetasol propionate. This is the active ingredient in Prescription-Only medicines used for the treatment of a range skin conditions such as psoriasis and eczema.
Creams containing steroids should be used sparingly and as directed by the prescriber. They should not be used on children under 1 year of age.
This follows a warning earlier this year for a product called Yiganerjing Cream described as a “natural” Chinese herbal medicine that contained the same steroid and antifungal ingredients.
Dr Chris Jones, Manager of the Medicines Borderline Section at MHRA said:
We have again identified a potentially harmful cream described as a natural Chinese herbal medicine on the market.
Selling creams directly to the public that contain strong steroids is illegal and they are potentially dangerous if they are used without medical supervision.
Steroids must only be prescribed by healthcare professionals who follow strict criteria when prescribing them and can monitor patients using them. They can suppress the skin’s response to infection and can also cause long-term thinning of the skin. If steroids are applied long term, particularly on children, they can lead to other medical problems.
Our advice to anyone who has bought it previously or is currently using Zudaifu cream – particularly on young children and babies – is to stop using it immediately. If you have any questions, please contact your healthcare professional.
If you are unsure about the safety of a medicine claiming to be “natural” or “herbal” you should check for a Marketing Authorisation (MA) or Product Licence (PL) number or Traditional Herbal Registration (THR) number / the THR logo. This means the product has been assessed by MHRA for safety and has been manufactured correctly. For more information, visit NHS Choices.
If you are aware of Zudaifu cream being sold, please report it to MHRA.
Posted by: Fred - Tue-18-12-2018, 16:08 PM
- Replies (7)
Lilly syas Taltz demonstrated superiority in improving active psoriatic arthritis compared to Humira.
Quote:
Eli Lilly announced today Taltz (ixekizumab) met the primary and all major secondary endpoints in the Phase 3b/4 SPIRIT-H2H study, which evaluated the efficacy and safety of Taltz versus Humira® (adalimumab) in patients with active psoriatic arthritis (PsA) who are biologic disease-modifying anti-rheumatic drug (DMARD)-naive. The SPIRIT-H2H trial is the first completed large head-to-head (H2H) superiority study in active PsA. This open-label, randomized, controlled trial is the first and only H2H study that utilizes on-label dosing for both Taltz and Humira and includes concomitant conventional DMARDs.
At 24 weeks, patients treated with Taltz met the primary endpoint by demonstrating superiority in improving the signs and symptoms of active PsA compared to Humira as measured by the proportion of patients simultaneously achieving at least a 50-percent reduction in disease activity, as defined by the American College of Rheumatology (ACR50), as well as complete skin clearance as measured by the Psoriasis Area and Severity Index (PASI100). In addition, Taltz met the major secondary endpoints.
"The positive results from the SPIRIT-H2H trial reinforce that Taltz effectively treats the debilitating joint signs and symptoms of active psoriatic arthritis, while also providing skin clearance," said Lotus Mallbris, M.D., Ph.D., vice president of immunology development at Lilly. "These results provide evidence that Taltz can be used as a first-line biologic treatment for patients with active psoriatic arthritis."
A total of 566 active PsA patients were enrolled in the study to evaluate the efficacy and safety of Taltz compared to Humira. Patients with active PsA were randomized to receive Taltz at the approved dose (160-mg starting dose followed by 80 mg every four weeks), or Humira (40 mg every two weeks) for a total of 52 weeks, with the primary analysis conducted at 24 weeks. Patients meeting criteria for moderate-to-severe plaque psoriasis received the approved dose of Taltz (160-mg starting dose followed by 80 mg every two weeks from Week 2 to Week 12 and every four weeks thereafter) or Humira (80-mg starting dose followed by 40 mg every two weeks, one week after the initial dose).
"In the SPIRIT-H2H trial, Taltz demonstrated superiority in improving active psoriatic arthritis compared to Humira," said Philip Mease, M.D., Swedish Medical Center/Providence St. Joseph Health and University of Washington. "This study will help raise awareness and better inform conversations between patients and their healthcare providers about treatment options for active psoriatic arthritis."
In SPIRIT-H2H, the safety profile of Taltz was consistent with previously reported results. No new safety signals were detected.
Lilly plans to submit detailed data from the SPIRIT-H2H study for disclosure at scientific meetings and in peer-reviewed journals in 2019.
So my son finds the Clobex Shampoo is to annoying to apply and it is thinning his already fine and very blond hair which makes the psoriasis easier for others to see. Any one tried any shampoos that are easy to apply and work for you? By easy to apply, I mean it works like an actual shampoo...you put it on, lather, let it sit for a few minutes and rinse off. His scalp is pretty bad. Starting the Stelara pretty soon but would be great if he didn't feel he had to hide in a hat every day...
Has anyone tried CBD oil (Cannabidoil)? It is now legal in Canada and I have a friend who I just discovered has Psoriasis. She swears by CBD oil skin cream and hemp oil for her scalp.
Hi, Just a quick introduction from me to your forum. I have had psoriatic arthritis since the mid 90s and have had most of the treatments prescribed over the years.I was just wondering if anyone he's any problem with eyes itching..I began treatment of taltz on Wednesday and have developed itching of my eyes today.I wondered if it was common. I have took loratadine tablets daily and eyedrops but it's not working. Any advice would be greatly appreciated.
Thanks in advance. . grifter123
Posted by: Fred - Fri-14-12-2018, 11:39 AM
- Replies (8)
This study suggests long‐term, low‐dose acitretin in patients with psoriasis is unlikely to cause significant liver or lipid problems.
Quote:Background:
This retrospective observational study aimed to investigate the long‐term safety, drug survival, and factors associated with the survival of acitretin in a real‐world setting.
Methods:
Data of adult patients with psoriasis who attended Siriraj Hospital between 2012 and 2017 and were treated with acitretin were reviewed. Demographic data and clinical courses were recorded. The Kaplan–Meier curve and Cox regression were used to calculate drug survival and the factors associated with drug survival, respectively.
Results:
Of 104 patients, 56 and 48 were male and female, respectively, with a mean treatment duration of 3.2 years. The mean cumulative dose per patient was 19.28 ± 7.84 mg/day. Acitretin was administered to 73, 39, 24, and six patients for more than 1, 3, 5, and 10 years, respectively. Most side effects were mild and tolerable; only nine patients withdrew acitretin due to side effects. No patients developed clinical features of cirrhosis or uncontrolled hyperlipidemia. The drug survival rates were 79%, 69.5%, 61.2%, 57.6%, and 53.5% at 1, 2, 3, 4, and 5 years, respectively, higher than those of previous studies. Patients without obesity, metabolic syndrome, and dyslipidemia did not have a significantly longer acitretin survival compared to patients with these comorbidities.
Conclusions:
Long‐term, low‐dose acitretin in patients with psoriasis is unlikely to cause significant liver or lipid problems. In countries with difficulty accessing biological agents for psoriasis, acitretin may have a high drug survival rate due to its long‐term safety. This study has several limitations: its retrospective nature, single‐center study design, and small sample size.
Source: onlinelibrary.wiley.com
*Retrospective observational study no funding declared.
Does anyone get blisters on there palms and feet. Has anyone found something that can stop it. I’m on enbrell and using fluocinonide cream but the blisters are so bad I can barely walk. I use baking soda to bathes to help with the pain and soreness. Any input would be appreciated.
Posted by: Fred - Wed-12-12-2018, 15:24 PM
- Replies (15)
Janssen has said in it's new phase 3 data that Tremfya has beaten Cosentyx in a head to head.
Quote:
The Janssen Pharmaceutical Companies of Johnson & Johnson today announced results from the ECLIPSE study demonstrating that TREMFYA® (guselkumab) was superior to Cosentyx® (secukinumab)* in treating adults with moderate to severe plaque psoriasis for the primary endpoint assessed at week 48. Data from the multi-center, randomized, double-blind head-to-head Phase 3 study demonstrated that 84.5 percent of patients treated with TREMFYA achieved at least 90 percent improvement in their baseline Psoriasis Area Severity Index (PASI) score at week 48, compared with 70.0 percent of patients treated with Cosentyx (p<0.001).
These data, to be presented at the 3rd Inflammatory Skin Disease Summit in Vienna, December 12-15, mark the first-ever results from a head-to-head study comparing an interleukin (IL)-23-targeted biologic therapy (TREMFYA) with an IL-17 inhibitor (Cosentyx). ECLIPSE is Janssen's fourth TREMFYA Phase 3 study in plaque psoriasis and is part of a comprehensive clinical development program that also includes ongoing Phase 3 studies in psoriatic arthritis and Crohn's disease.
ECLIPSE incorporated six major secondary endpoints that used a fixed statistical sequence procedure to control for multiple comparisons and included both shorter and longer-term analyses. TREMFYA demonstrated non-inferiority to Cosentyx in the first major secondary endpoint, with 84.6 percent of patients on TREMFYA achieving a PASI 75 response at both weeks 12 and 48 vs. 80.2 percent of those on Cosentyx (p<0.001), however, it did not demonstrate superiority (p=0.062). Because superiority was not demonstrated for the first major secondary endpoint, p-values for all the subsequent major secondary endpoints were considered nominal.
Three of the remaining major secondary endpoints evaluated efficacy at week 48, including achievement of a PASI 100 response and Investigator's Global Assessment (IGA) scores of 0 (cleared), or 0 or 1 (cleared or minimal disease). At week 48, 58.2 percent of patients receiving TREMFYA achieved a PASI 100 response, compared with 48.4 percent of patients receiving Cosentyx; 62.2 percent of patients receiving TREMFYA achieved an IGA score of 0 compared to 50.4 percent of patients receiving Cosentyx; and 85.0 percent of patients receiving TREMFYA achieved an IGA score of 0 or 1 compared to 74.9 percent of patients receiving Cosentyx (all comparisons with nominal p≤ 0.001).
The remaining major secondary endpoints assessed non-inferiority of TREMFYA versus Cosentyx at week 12. The percentage of patients achieving a PASI 75 response at week 12 was 89.3 percent for TREMFYA and 91.6 percent for Cosentyx (p<0.001 for non-inferiority); the percentage of patients achieving a PASI 90 response at week 12 was 69.1 percent for TREMFYA and 76.1 percent for Cosentyx (p=0.127 for non-inferiority).
"The response-over-time curves show that maximum response rates with TREMFYA are achieved after six months and are maintained over time through one year, achieving superiority at the primary endpoint of the study," said lead study investigator Richard Langley, M.D., FRCPC, Professor, Division of Clinical Dermatology & Cutaneous Science, Department of Medicine, Dalhousie University. "Results of the study confirm a slightly more rapid onset of response with Cosentyx, but importantly, in a chronic disease like psoriasis, these data provide new insights into comparative longer-term efficacy."
Through week 44, 27 patients (5.1 percent) randomized to the TREMFYA arm discontinued treatment compared with 48 patients (9.3 percent) randomized to the Cosentyx arm.
The safety profiles observed for TREMFYA and Cosentyx in ECLIPSE were consistent with the known safety profiles seen in the respective registration trials and current prescribing information. Similar percentages of patients receiving TREMFYA (77.9 percent), and Cosentyx (81.6 percent) reported at least one adverse event (AE). Serious AEs were reported in 6.2 percent of patients receiving TREMFYA and 7.2 percent of patients receiving Cosentyx. Serious infections occurred in six patients receiving TREMFYA and five patients receiving Cosentyx.
"Fortunately for patients, there are many good treatment options available for plaque psoriasis today. However, to make the best recommendation for their patients from among these options, physicians need long term comparative safety and efficacy data. We're proud to have conducted this important trial to help guide clinical practice and continue to build on the robust database of clinical information that we've been able to generate on TREMFYA, the first IL-23 inhibitor," said Newman Yeilding, M.D., Head of Immunology Development, Janssen Research & Development, LLC.
Posted by: JRW80 - Fri-07-12-2018, 00:15 AM
- Replies (16)
I'm going to see the derm next week about switching to Taltz. I've been on Stelara for about 10 years (1 month after it was approved). It just doesn't seem to be as effective at my extremities. PsA in my feet is ridiculous, as is Plaques on my toes. Stelara has never done anything for my nether region. From what I can tell Talz theoreticlly should be better in all areas, but of course I'll never know unless I try it...
Which brings me to my question about cutting over to Taltz from Stelara. There are no guidlines for this, and you can't completely wash out as you'd have to be off Stelara for like a year. I remember the rheumy wanted me to wash out of the Humira for 3 months. It's not her joints that might get permanantly damaged of course. Fortunately, it was being perscribed by a derm that didn't really care what I did, because it was so new she had position to say anything. Is there any real need to wash out or just jump right in and be ready with a Z-pack if I get sick?
I live in California. I have moderate-severe psoriasis. It covers my legs, arms, head, my back and few nasty spots on my forehead and side of my face. I have tried lifestyle changes, I fixed some issues with my gut like Small Intestinal Bacterial overgrowth (SIBO) and yeast issues.That didn't help. I have tried red light therapy in a tanning salon. And I have been doing Phototherapy. The problem has been I have Blonde hair and Blue eyes so very photosensitive. I can get to about 450 Lumens and then I burn.
I was desperate at one point when I had a bad reaction to the light therapy and I was up all night with pins and needles pain and itching out of my mind. My niece convinced me to try these lights which are a combination infrared, red and blue light.
Honestly, it did not really help the psoriasis but these are for inflammation, pain etc. I no longer have pain in my hands, back, knees and feet from Osteoarthritis! I use the pads on my head and the eye mask everyday. The light therapy has really helped me cope with depression, anxiety too. So I consider it a very worthwhile investment!
Anyway, The doctor decided to do a punch biopsy to confirm my diagnosis. I got a terrible MRSA infection from that. Over that now. Yeah!
Back on the light therapy - started at the bottom level 200 and I am only back up to 250 now.
My Dermatologist wanted me to start on Cosentyx.
I have been very reluctant to jump on that. Without the drug, In the past I have had chronic sinus infections, bronchitis and Candida. So, I worry about suppressing my immune system.
But I have just hit a wall with this disease and I think I am ready. My husband and I Love to travel, go to Belize etc. That is out until my skin is better because I can't stand to be in a hot humid environment.
So that is my long background. I hope I haven't overshared. I am really looking for support and information on other people's experiences with Cosentyx. Did they experience Candida, complications etc.
I've had mild plaque psoriasis for about 18 years (elbows, knees ankles) and only recently started really looking to understand it, as it (luckily) doesn't severely affect my daily life.
One thing I've come to realize, is my immune system is generally way worse than the average person when it comes to flu/cold. I get sick more often and more severely than most people. Anyone else notice this? Can/is it attributed to psoriasis? Or am I just a wuss?
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Psoriasis Cure!
How many people have Psoriasis?
In 2012 there were approximately 36.5 million prevalent cases of psoriasis, and by 2022, GlobalData epidemiologists forecast that this figure will reach approximately 40.93 million.
The condition affects individuals of both sexes and all ethnicities and ages, although there is a higher prevalence of psoriasis in the colder, northern regions of the world.
The prevalence of psoriasis in the central region of Italy is 2.8 times greater than the prevalence in southern Italy.
Caucasians have a higher prevalence of psoriasis compared with African-Americans, but African-Americans in the US tend to suffer from a more severe form of the disease.