Hi guys, I’ve been receiving some email alerts about “Fast Hidradenitis Suppurativa Cure” e-book/guide. (It’s not free, and I haven’t bought it). Is this the cure that HS sufferers are waiting for? More »
Vicks isn’t really recommended for use on broken skin, but as you may know, HS sufferers are desperate and will try about everything. It if works, then great. Stick with it!
First of all, here’s a list of the ingredients:
- eucalyptus oil 1.5 %
- turpentine oil 5 %
- camphor 5 %
- levomenthol 2.75 %
- nutmeg oil
- cedarwood oil
- white soft paraffin
Vicks is a topical analgesic. The menthol in it draws the HS stuffs out. Lots of hidradenitis suppurativa sufferers use it on broken skin, and it sooths the painful bumps.
As soon as bumps appear, apply Vicks on it until it is drained. It can also hasten the draining/bursting process and also has a pleasant smell. It might also sting a bit on other areas like the groin area.
Are you using Vicks? How is it working for you?
Roaccutane is used for acne sufferers and may be prescribed by your GP. Although different people have different reactions to it, for most of our research on people with HS, Roaccutane didn’t work.
Here’s a story from Sheryl, age 33 and has HS, who was prescribed roaccutane for her facial acne: (It worked okay for her)
My acne cleared up within 3-4 weeks, the side effects were less and were tolerable after 6-8 weeks. I am still taking the Roaccutane, I am never clear of the HS and my flare ups seem to occur every 6 months.
hs-usa.org says that roaccutane is not effective for HS patients, although it may help for those who have co-existing acne.
Here’s a summary of users feedbacks:
- Did nothing for me, short- or long-term
- Couldn’t tolerate it
- Helped my Acne, not my HS
- Got worse
- Headaches from hell, swelling of the optic nerve, and anxiety
A lot of the feedback were negative.
Some side effects:
- dry/cracked lips and skin
- being depressed
- muscle ache
It is also dangerous for pregnant women.
Still, it may work for you! Just know and be informed – watch out if side effects gets too bad. Also prepare Cetaphil for your skin on hand, don’t be exposed in the sun, and also prepare aquaphor for your lips and nose.
Now this is a very sensitive topic. You and your partner may change minds constantly about this.
For those with HS and having a child, it always comes up on their mind:
- “What if I pass it on?”
- “How will they live their lives with HS?”
Some also think that bringing someone into this world and be cursed with hidradenitis suppurativa is a high injustice, and really so sad.
Beat HS, and don’t let it win!
I do believe that as time passes, more people will know about HS, study it, and will have a treatment for it! Science is making huge progress every year. Scientists are now even studying and doing research on the genetic level.
Have faith in your child.
Chances of Passing it On
- It is a hit and miss. For most people, HS first appeared when they are already adults. Most children don’t show any signs yet, although HS can come at any point of a person’s life. Some doctors also think that it can skip a generation.
- It is not a hundred percent that you will pass this disease to your children.
How about your parents?
- Did they know about HS when you were still a child? How did they raise you?
- If your child does indeed grow up to have hidradenitis, then they’re lucky since you are there to guide them.
How about adoption?
If you are open to adoption, then this might be a viable option for you.
Don’t let it stop you from having babies!
There are a lot of HS sufferers who have attested that turmeric has helped with their flares/lumps. Turmeric is a spice and is the same family of ginger. It has anti-inflammatory agents and anti-oxidants. Turmeric is also one of the world’s most studied spices because of its health benefits. People with HS are also desperate for something that can lessen the flares, bumps and the its nastiness.
Now I’ve done research about Turmeric and HS, and you’ll find out below:
- the range of its effectiveness
- any clinical studies that might be going on right now
- Who should NOT take it
- Should you take the pills form?
- how to make a paste and preparations
- Side effects you need to watch out for
- And other things you need to consider
How effective is it?
Lots of HS sufferers who have tried turmeric says that it does work, or their flares have really died down. According to those who have tried turmeric, it does help alleviate the problem, but it doesn’t fix the problem. It can make the flares less nasty, painful, nasty, and it can reduce the re-occurrence. It also may not work for everybody, but it is definitely worth taking a shot, right?
Are there any Clinical Studies?
It is important to note that there are no published studies.
Who should NOT take it?
- - Pregnant or those who are breast-feeding should consider going to the doctor first
- - For pills or capsules, those allergic to ginger or yellow coloring.
- - Turmeric is also not recommended for people that have gall bladder problems.
Pills, capsule or the spice?
Some people have had success with the capsules and pills, and others had success with the actual spice. Test it out. Try out which one works for you.
Turmeric spice Preparation:
Note: It is somewhat unpleasant and gross
Turmeric’s flavor is somewhat unpleasant and gross when taking it. Also, when mixing it, don’t stop the stirring since it will settle at the bottom. You can also eat something that you like just after taking the turmeric.
You can make a paste with water. Take 1 tsp turmeric then mix it with warm water. Take this about 2 or 3 times a day.
Different people are having success with different dosages and frequency. You can try 2 to 5 times daily for your first week, then you can decrease it gradually. Play around with the dosage.
You can also mix it with chicken broth. This is great since it won’t taste nasty.
1 teaspoon turmeric
1 virgin coconut oil
1 pinch of black pepper
Mix together the turmeric and coconut oil until turmeric dissolves. Add water based on your liking and drink. The coconut oil helps the turmeric to be absorbed better by the body.
Side effects you need to watch out for?
- Look out for any allergies that occur.
– Taking the capsule after eating can cause an upset stomach.
Other things you need to consider:
Drink lots of water
Try to not miss a single dose. Some people have noticed the lumps coming back after missing a single dose.
If you find this article useful, do help me out also, like our page at https://www.facebook.com/HSGoAway, and share this article at different social networks. Thanks a lot!
For now, there is not much information on the recommended deodorant for those that have HS in the armpits. Some doctors have advised not to use anti-persperants, and some recommend herbal deodorants. Deodorants can also worsen the symptoms if a person has an outbreak.
An HS sufferer should test what works for him/her, and they should try different things until they find something that works.
Here are some suggestions from other HS sufferers:
- Dove Dry
- Germ-X hand sanitizer – Apply in hand, rub together, then put on underarms. If you have open sores, you can experience some stingy feeling
- Tom’s naturally dry deodorant
- Crystal deodorant + Dry-Sol – alcohol based, but it really burns bad.
- Secret with Oil of Olay – For some, this doesn’t irritate and is creamy.
- Plexus Body Cream
- Blue Emu in the morning, then at night, tea tree oil. Tea tree oil helps with the healing and swelling, and the Blue Emu helps with the pain.
- tea tree oil with aloe juice
- coconut oil with some essential oils
- baby powder
Having a relationship(and dating) is a common scary thought for HS sufferers. Should you entertain dating now? Will he/she accept me(and my HS)? Will I grow up and reach old age alone?
rubysue11 from dailystrength.org also posed a somewhat similar question:
How do you start to have that conversation with somebody? hey, I like you, you like me, by the way I have hidradenitis supurativa!! without being sure if i can even pronounce it, I’m not sure thats the way to go about it. do I wait til were about to make love? do I bring it up casually, or do I explain how hard it is for me to tell him about it?
AcoustiCoco4136 replied with:
I’m the type that believes in transparency when meeting someone new. I can’t say that it’s done much positive for me when it comes to dating because HS has played a very large part of the failings of 3 of my relationships. At first, they were ok with it, until they realized it may mean not being able to walk around the beach all day long on the hottest of summer days because of the irritation that can come from sweating and then the constant friction of sweat soaked clothing etc.
melrae01 also said:
With all of that said, ease into a relationship, talk about it often with the person before you get intimate, let him/her see your scars, let him/her go to the Dr. with you, possibly let him/her read info on the internet (after you explain it the best you can) and take the relationship slow and do things step by step. Hang in there!
HS does not define who you are as a person and if someone can’t see past the scars then it is their lost.
I also have a question:
What works for you, telling someone about your HS through facebook/email, basically online? Or do you prefer to tell him/her personally?
Hi, below you can find information about:
- Is HS Disabling?
- Social Security Administration notes
- Can you get an attorney?
- Information on disability cases lost
- US Disability benefits HS discussion
- UK Disability benefits Hs discussion
Do comment below for reactions and thoughts about this article. We really appreciate it.
Is HS disabling?
Yes. Its severity, frequency and duration of symptoms determine if one can receive disability benefits.
Social Security Administration notes
In the US, the Social Security Administration (SSA) recognizes “chronic infections of the skin and mucous membranes” as Skin Disorders under Section 8.04 of the Blue Book. Section 8.06 also describes HS:
8.06 Hidradenitis suppurativa, with extensive skin lesions involving both axillae, both inguinal areas or the perineum that persist for at least 3 months despite continuing treatment as prescribed.
Some have adviced that if you can work, then stay off the disability. But if you really need it, then you shouldn’t stop. Gather all your documents, present all your evidence – e.g. derm visits, ER visits. Lots of people don’t know about HS, even lots of physicians don’t have any idea. It’s also great if you can get your doctor to write that HS has incapacitated you, and that you are in deep pain.
There’s nothing to be embarassed, tell them about everything – How it affects your life, etc.
Can you get an attorney?
It’s also good if you can get a social security disability attorney who understands the condition.
What must your Social Security disability attorney do at your Social Security hearing? He or she must raise the issue of Listing 8.06 and argue that the diagnosis, duration, location, impact, and daily care of your HD impedes full-time employment. Additional legal documentation, as well, can win claims.
Information on disability cases lost
Here are also some information on why many disability cases are lost at the disability application and reconsideration appeal levels.
From ssdrc.com website:
Speaking as a former Disability Claims Examiner, I can state that there are several reasons:
1) Social Security makes no attempt to obtain a statement from a claimant’s treating physician. By contrast, at the hearing level, a claimant and his or her disability attorney will generally obtain and present this type of statement to a judge;
2) Prior to the hearing level, a claimant will not have the opportunity to explain how their condition limits them, nor will their attorney or representative have the opportunity to make a presentation based on the evidence of the case. At the hearing level, of course, this is exactly what happens. And a number of disability representatives will also take such steps even earlier, at the reconsideration appeal level;
3) Disability judges, unlike disability examiners who decides cases at the first two levels of the system, can make independent decisions without being overturned by immediate supervisors–which happens frequently.
US Disability benefits HS discussion:
A can offer this piece of advice: Once you have made the decision to apply get a lawyer. Most will work on contingency for a percentage of your back pay so money isn’t an issue.
UK Disability benefits HS discussion:
Hi. It will be very difficult to get ESA for HS.” Also, “Don’t just fill in the form add written documentation about how this affects your life. Describe an average day. As HS isn’t on the DWP site enclose documentation from the NHS site about the condition.
When I filled in the questionnaire for them I included a printed copy of the internet explanation for the disease and also a copy of my scan results for my back
Any reactions and thoughts about this article? Comment below now.
I’ve been receiving some email alerts about “Fast Hidradenitis Suppurativa Cure” e-book/guide. (It’s not free, and I haven’t bought it). Is this the cure that HS sufferers are waiting for? Of course this got me curious. Those with HS are desperate, and probably a number of people have already bought this. It would be bad if someone just puts up this e-book for a quick buck.
Now from my initial research, it is an e-book by a woman named Therese Williams. I searched for it on google, and most web results were somewhat ‘shady’ for me.
An easier way to search real reviews is by searching through discussions/forums, and I found the below information in mdjunction and dailystrength. Thank goodness those sites have info about this e-book. I just posted their feedback below, so just read on:
I also suffer from stage 3 HS and have since I was very young. It has been such a horrific journey for me but have found a few things that have helped to lessen the severity of my outbreaks and for me that is as good as being cured in my eyes. I know that I will continue to suffer with this disease but I can make it better and easier to live a normal life and that is ok with me! I have tried every diet imaginable and have used every cream/pill/ infusion offered and am highly unsatisfied with them all… I do not put any stock in “cures” anymore and stick to things that offer some relief. I have purchased the book and eagerly read it hoping that I would learn something new and would find my miracle cure only to find that I have a smaller bank account lol.. Wink it is definitely not worth the money in my opinion but with that said, different people react in different ways to things so what does/does not work for me may be the opposite for someone else. I have dramatically changed my diet to be healthier as well as started taking biotin and coconut oil and I bathe everyday with timewise cleanser and have seen dramatic results in the frequency of my flare ups. I still look like an overgrown road map but the sores are not as prominent and that is as good as good to me. I loved my results so much that I will not let myself get below half a bottle of the biotin or the coconut oil and I had trouble getting my cleanser when I needed it so I signed up to sell it so that I would not run out! If I miss a day or two of the supplements and have run out of the cleanser and have to wait for it to ship then I end up with twice as many flare-ups… I am not saying this will work for everyone but it has given me back my sanity and I have a more active and normal life. I was even able to go to the beach this past week and wear a bathing suit without feeling like a complete monster!!! Anyway, in my opinion do not waste your $ on the book unless you think you should! There is nothing new in there that you probably do not already know!!
I tried her book thing and it wasn’t that helpful but definitely put my on the right track. what she does recommend in the book is how to basically eat healthier. That got me thinking that HS is due to what I’m putting inside my body. It has been 7 months now and I’ve only had 2 major cysts. Let me tell you what I did. I started doing a lot of online research and found out about these compounds called alkaloids that are contained in certain foods called “nightshade foods”. The most common nightshades are potatoes, tomatoes, peppers, and eggplant. I’ve avoided them and now my life is new and improved. I swear… it’s like a miracle. Now, a lot of people swear on a dairy-free diet, etc. But I swear on a nightshade-free diet. Anyway, the way to find out which foods are the main trigger is to visit Rob Wolff’s Paleo diet (for auto-immune diseases) on google, and follow his directions I wish you the best!!!!
by no means does it cure everything within 3 days, however I have noticed that the pain is not as severe, I think i paid 39$ for it so I thought I would give it a try. The first part of the book just gives alot of info which i already knew. The best part of the book is near the end. Also if you read a post titled “doing much better” which was posted by jeanette she has ALOT of great suggestions as well. What im finding in doing my reading is this desease really has no cure, and its strongly related to changing our eating habbits and changing our diets. ie no wheat, dairy, limited red meats, SUGAR is a big no no. etc. o_O
his follow-up post:
” Ugh! Hey group. Just wanted to passon some info, the book “fast HS Cure” is not standing up to its big statement … getting rid of pain within 3 days. I have tried it since Saturday and my pain is crazy! I had an apt with a general surgeion @ the rqst of my Derm Dr. and he stated 1st.. the infection is crazy and 2n, he is not confinced that once infections are gone, he would suggest sugery, as its known to show its’ ugly face in other areas/regions. On a side note, any suggestions for pain would be appreciated. cheers! “
So these reviews are the ones I’m looking for. Basically, from the reviews, the e-book is all about eating healthy, and having a healthy lifestyle.
If you have done a deep(er) research about HS, then quoting from kennysmom309 above, “There is nothing new in there that you probably do not already know”.
I guess it’s useful for those that want a quick and done-for-you info-pack about HS and diet/eating healthy.
Tip: I’ve also been reading about paleo diet and HS, and there are a number of actual/real HS sufferers that gave it their thumbs up.
Also, have you bought the e-book? What are your thoughts about it? Just comment below.
For HS sufferers who have moderate to severe symptoms, surgery is often recommended. The reason for this is to remove the lumps on various parts of the body to reduce re-occurrence. Surgery for this condition generally involves a broad surgical removal of the affected area as well as other types of skin reconstruction.
All of these resolutions are intended to reduce the rate of re-occurrence of the lesions among patients suffering from severe conditions of Hidradenitis Suppurativa.
(Some HS armpit surgery)
The next thing that must be determined, is when the best time for this type surgery?
It is also important to note that antibiotics as well as other minor surgical procedures are necessary to insure that the patient is stabilized, and the acute phase of the illness is brought under control. This may involve draining the abscess correctly. This may involve a broad surgical excision being initiated at this point.
There should also be a complete surgical reconstruction plan in place, to make sure that the surgery will reduce the re-occurrence of the condition.
Additionally, it is important to insure that there will not be any infections or other complications after the surgery is performed.
Kinds of Surgery for Hidradenitis Suppurativa
There are a number of different surgical treatments that are available. Each of these can be used, depending on the patient, and the severity or extent of the condition. The following are some examples of the surgical treatment:
Broad Scale Excision: This usually involves the removal of affected tissue. Patients who are suffering with stage 2 or 3 of HS are encouraged to have this type of surgery. The patients with stage 2 HS can have the sinus tracts removed, but for those patients with Stage 3 HS, it is usually necessary to have more extensive surgery due to the nature and size of the areas affected. The scaring is usually more extensive as well.
In broad excision operations, there is always the question regarding providing appropriate skin coverage.
Although allowing the area to heal by use of secondary can be an option, especially in perianal areas. An application of a divided thickness skin graft may be done following the surgical procedure. This procedure allows for better coverage of large area wounds and significant healing problems with wounds of this nature. Skin grafting around or near the anal area is not recommended as there is a serious risk of stenosis developing. Finally, despite that large area of excision it is possible to attain complete closure by elevating the entire area until the complete closure is achieved.
Incision and drainage. This involves lancing and draining the infected matter from the abscesses. Patients with stage 1 usually have this done and then it is followed with antibiotics.
Carbon dioxide laser treatment. This type of treat is not widely used in many hospitals. It involves leaving the wound area open to the air after the tissue has been vaporized.
Radiotherapy. This is another new, innovative treatment that is not widely used in hospitals, but is considered to be effective.
These different types of surgical treatment can be helpful in many of the cases of Hidradenitis Suppurativa. This is considered to the most efficient way to deal with these problems. Much however depends on the patient and the type surgery that would be the most beneficial to them in their particular case.
I’ve been reading a lot lately about smoking and HS, and found out about this actual study. Great to read that an actual study has been done about HS and smoking. Hope to see more HS awareness, experiments, and cure.
Cigarette smoking as a triggering factor of hidradenitis suppurativa
– König A, Lehmann C, Rompel R, Happle R.
Department of Dermatology, Philipp University, Marburg, Germany. firstname.lastname@example.org
From the exceedingly high rate of smokers among patients with this condition we conclude that cigarette smoking is a major triggering factor of hidradenitis suppurativa. Remarkably, the disease can be categorized as a smoking sequel that is neither of vascular nor neoplastic nature. Because familial occurrence was rather rarely reported, and because an environmental factor in the form of cigarette smoking appears to be of crucial importance to trigger the disease, we assume that the genetic basis of hidradenitis suppurativa is polygenic rather than mendelian. Smoking cessation should be encouraged particularly in patients with hidradenitis suppurativa although it is unknown whether this improves the course of the disease.
So, smoking is a major triggering factor of HS. Stopping of smoking is encouraged in HS patients, but no study yet if this(stop smoking) will really improve the HS condition.
There you go guys, a good find and a good read.
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