RSS – Patient Histories

/RSS – Patient Histories

Testimonials From The Internet

A Word From Douglas Maddy –

Conversation thread from the Topical Steroid Withdrawal-Red Skin Syndrome Support Group

I have so much so much respect for Dr.Rapaport.
Imagine if you discovered the cure to a widespread skin disease.
Now imagine, how you would feel, if you had difficulty getting the solution across to other dermatologists.
How frustrating would that be?
Then, after 30 years of seeing people suffer unnecessarily,
You then decide to reach out to the patients directly, who are not medically trained and don’t understand mechanisms in the human body in the same way your training has taught you.
So often, the patients of this horrendous condition also constantly question your methods.
That initial resistance, also must be frustrating.

Dr.Rapaport is just 1 man, he has discovered something which has the capacity to end so much suffering globally in the world.
He should be getting medals, awards and praise for his tireless hard work, but instead he’s fighting a battle on both sides, and all he’s trying to do is help people become completely cured.. and he does! He gets genuine life changing results!

Those who have suffered with red skin syndrome and worsening eczema, have often spent a lot of time and money trying various different creams, special diets, soaps and a variety of ultimately unhelpful remedies.

Yet at red- skin-syndrome.com, Dr. Rapaport writes honest blog posts answering common questions and addressing concerning issues with his thoughtful insights.
Having thoroughly researched the pathology of this disease, written 7 peer-reviewed scientific papers and curing over 3,500 patients! There is no-none else more qualified to consult with on this horrendous condition.

Dr.Rapaport has a lifetime of valuable expertise, and we should be grateful that he has taken the time to simplify his complex understanding of dermatology into a set of easy to understand articles and made them available for free at his website.
Yet despite this generous gift, there are some who expect more from him.
As a philanthropist, He can only contribute so much with his individual resources. .

How can he be expected to give medical advice on social media platforms without knowing the patients history?
How can he afford to run a business, pay staff, rates etc..and work for free?
There are ten’s of thousands of people suffering, if not more, who need the correct individual medical care,
How could he possibly treat all these patients by himself in one lifetime?
He can only give so much of himself freely.

If you believe you have red skin syndrome and you have the opportunity, I recommend one should redirect their investment of time and money away from the latest “Magic Pill” and instead seek professional guidance from Dr.Rapaport to help withdrawal from steroid addiction.

I feel very fortunate to have received a personal consultation with Dr.Rapaport and he doesn’t just treat the condition you have, He cares for you as a person. Unfortunately nowadays, this is a rare quality in a physician, a doctor who is so empathic and is considerate of the patients feelings.

When you have red skin syndrome and understand its orientation, its very easy to become angry and point the finger at individuals.
However, this is currently a systemic misunderstanding in the medical community, and its occurring on a global scale, people from all over the world unknowingly suffer with this condition believing it to be just the inherent nature of atopic dermatitis or other skin complaint.

Dr. Rapaport SHOULDN’T have to be spending his precious time reaching out to individual patients.
Other dermatologists SHOULD accept that red skin syndrome is real condition and more common than they realize.
Current patients SHOULD be recalled, made aware of their true illness and helped through the withdrawal process.
Future patients SHOULD be warned about the true potential side effects of unhealthy steroid cream usage.
It risks SHOULD be common knowledge amongst dermatologists that increased caution should be exercised upon prescription.

But this is not currently happening, the solution is suppressed, and this isn’t even a new discovery, Dr.Rapaport’s pioneering research many years ago confirmed the dangers of overuse.
There are forces in place to prevent change and awareness occurring, even some other eczema sufferers have difficulty believing this could be the reason for their ongoing skin issues.
It’s all so messed up! with such a simple solution, and yet it’s so difficult to get the idea across to others, this condition is still gleamed with such skepticism, because it’s not common knowledge how addictive steroid creams are and how appalling the side effects of withdrawal impacts people’s life’s.
I just think there is huge misunderstanding, poor communication, and we need a fundamental shift in public consciousness.

I personally think Dr.Rapaport is a living legend and it’s a pleasure to see he has made it his mission to raise awareness and help patients using this website. Patients and carers of young children with red skin syndrome often feel completely alone and ignored.

Dr.Rapaport is someone in our community who is not only listening and cares, but is also fighting ongoing battles for our plight to be acknowledged.
Please take the time to read the information on this website and share with others to discover solutions and raise awareness for this relatively unknown iatrogenic condition.

I wish you all the best on your healing journey towards the recovery of your health,

Douglas Maddy.

A Letter From Corrina Lee –

A Letter From An Inbox Conversation On Facebook

I am an old Canadian patient of yours, you worked with Dr. Karen Fraser on my behalf back in 2011. You had thought more was going on than TSW because my situation was so fierce. I do have both addisons and cushings now from neurotransmitters no longer being recognized/something-or-other all the time. My cardiologist says I have a POTS-variant now and I have lost my career to the dysautonomia.

I came up around 2013 and started steroids again! I had not actively chosen it the first time and it took a year to get into it again. There is a lot of PTSD to this. Anyway, I’m the one who talks about LDN for Atopy and I hope it doesn’t drive you nuts. The LDN has removed the gross edema aspect that made the TSW so grim the first time. It keeps my RSS to a level where I can be upright and move. I know my status, age and history (I had all the ovarian cysts and tumours growing up too), don’t give me much hope for full recovery but TSW is still a life saver for me. The addisons/cushings combo is my disabler and that mostly comes down from the nasal steroids.

I have posted a lot of studies — I have to, my insurance company doesn’t want me on their dime and no one will call it TSW! I am fighting for my life, I will lost my home if I do not do my own due diligence.

My last derm, top teaching derm at UBC, said I had a lifetime of under treated dry skin and prescribed a lifetime regime of steroids, al over/twice daily. Totally safe for the face, he had 30 years of education who was I to argue? He did not look at my pics or even examine my skin — he just shot me in the head financially.

I sobbed all the plane trip home. I am so happy to see you here on the Web, facebook and your blog. I hope you add psychological support or have a guest columnist who can help address some issues. Most of the time when we see you it’s not just a skin crisis, but a life crisis and I know that is our of your professional domain.

I’m attaching some pics of my history for you so you can hopefully recognize where I was and see how 19 months of TSW helped. I am now 13 months TSW#2 with LDN.

Very best regards,

Corinna

PS. Apart from an LDN for atopy/TSW, there is a main page for Topical Steroid Education (please let me know if you see any issue with this) and a group and page for help with depression – because TSW & Depression go together. My husband and I are starting up a fund for students and VUI to be able to stay in school but need a break from studies/exams due to illness. We have to pay it forward.

REPRESENTATIVE CASES OF RSS IN THEIR OWN WORDS

Partial personal histories from Arizona, Florida, Colorado, Australia & New York. All patients were cared for through telemedicine. Future histories will be from other patients from around the world.

Patient Appreciation

By | October 18th, 2015|Categories: Patient Histories|

Patient 5

By | July 27th, 2015|Categories: Patient Histories|

“I am pretty much bath bound most days. I’m covered in ooze from head to toe. Soaking through my clothes and bed sheets. I have cuts all over me. It is pretty [...]

Patient 4

By | July 23rd, 2015|Categories: Patient Histories|

“Dad’s past week has been a mixture of good and bad days. Heavy oozing to start the week and edema. Increased burning and little if any edema today. Here is his scale [...]

Patient 3

By | July 21st, 2015|Categories: Patient Histories|

“It all started when he was seven weeks with eczema on his cheeks. Diet did not help. Allergist prescribed us hydrocortisone and it worked for awhile. Then a friend of mine gave [...]

Patient 1

By | July 19th, 2015|Categories: Patient Histories|

“Eczema History: diagnosed with eczema at 4 months (am 27 years old now). Used topical steroids sparingly until age 8 when it became much worse. At that time, I took a course [...]

Patient 2

By | July 19th, 2015|Categories: Patient Histories|

“My son is 10 years old and has been dealing with eczema since he was about 3 years old. It started off as not a big deal but as the years went [...]

Patient Images