Readers,
I am very proud to be able to announce that I have now completed my Q&A with the founder and president of the ISN (International ScleroDerma Network) Shelley Ensz. I stumbled across the ISN through a magnificent website called Sclero.Org which is the largest website in the world on issues relating to scleroderma. I was initially misdiagnosed with Scleroderma and so joined the forum and found loads of genuine support from others suffering from this chronic and progressive condition.
Here is the Q&A
Shelley. Thank you for taking time out of your schedule to speak to Care.TV. I guess the best place to start this interview is at the very beginning.
Besides founding the International Scleroderma Network in 2002, you had also previously started up the website - Scleroderma from A-Z in in 1998. What was it that made you start the site and how much information was there on the net at the time with regard to scleroderma? And having started this website and seeing it grow in the way it has, what void did you feel the ISN would fill in a way the website itself could not do on its own?
When the Scleroderma from A to Z website at www.sclero.org had blossomed into 1500 pages in 15 languages, Arnold Slotkin encouraged me to start a nonprofit agency. Our site had already garnered tremendous international collaboration – among physicians and patients alike. We formed a nonprofit to expand upon that, to tackle scleroderma research, support, education and awareness. The budding Internet provided the means for this unprecedented worldwide collaboration of extremely talented, enthusiastic and dedicated virtual volunteers.
One of the most problematic issues with scleroderma is the ability for early diagnosis. Do you think this is unique to scleroderma or is something that is a hallmark of all autoimmune diseases?
Please bear in mind that I have no medical training and this is only my personal opinion. Difficult diagnosis seems to me to be a hallmark of nearly all autoimmune diseases. Some of the distinctions between types of autoimmune diseases – and even between types of scleroderma – are rather artificial, and often more useful for researchers than patients.
They say it takes an average of more than 6 years for women to be diagnosed with scleroderma; but about 3 years for men, of comparable symptoms and onset. The tragedy of delayed diagnosis is that scleroderma often wreaks the most damage – and the most preventable damage — within the first three years. It takes enormous resilience for patients to survive — medically, psychologically and financially — until an apt diagnosis is achieved.
Are you surprised as to the fact that there is still no cure for this disease? And do you believe that we are not too far away from finding a cure or is that still far off in to the horizon?
Sometimes I’m overjoyed to think perhaps a cure has already been discovered. At other times, I despair about how elusive, dangerous, expensive, experimental, or impractical many of the current scleroderma treatments seem to be. Thankfully, abundant and stellar research is tackling every aspect of scleroderma now by brilliant scleroderma researchers collaborating on global planes, such as the Scleroderma Clinical Trials Consortium (SCTC), EUSTAR, and the NIH.
Our shared goal is to eradicate scleroderma worldwide; not just in an exclusive niche of wealthy people involved in very selective advanced research protocols in the U.S. Although, we certainly have to begin somewhere.
At the moment, it’s just hard to give a rip-roaring pep talk to the masses when most treatments are still for the “classes”, so to speak…classes of wealth, as well as classes of scleroderma, as the types vary tremendously in onset, symptoms, and progression.
How would you rate treatments like cytoxan and cellcept as effective management of Scleroderma?
I would urge everyone to discuss all of their treatment options with a scleroderma expert. Not everyone will benefit from aggressive treatments at all times; it depends on their particular symptoms and the phase of their disease process, as well.
How much public awareness is there of scleroderma in the community?
Great strides have been made in raising scleroderma awareness made by individuals, agencies and celebrities — but we have just begun. All of us are harkening the clarion call to tackle scleroderma. It may be years before we reach our crescendo, so we need everyone’s help.
I beckon all of your CARE.TV adherents to learn about scleroderma, pass out our awareness bracelets, give speeches and school reports about it. Hold a fundraiser for the ISN. Dedicate a Saturday afternoon or your entire life to this terrifically deserving cause. We truly need and welcome your help to tackle scleroderma!
If I could talk a little bit about the forum on Sclero.org, one of the most heartrending things we see are the posts written by newcomers that usually starts off with “new to this forum and scared”..and you really can taste the fear….what is your advice to those who have just found out that they have scleroderma?
Living with scleroderma is a lot like trying to wrestle a ghost in a tub of jello: if you think you’ve got a grip on it, you’re probably imagining things. So as you’ve found, our online meeting, Sclero Forums, is incredibly necessary and helpful!
A scleroderma diagnosis is seldom a cut-and-dried thing. Usually it is a progression, over the years, of doctors suggesting a person might have arthritis, or autoimmune disease, or connective tissue disease or simply depression or health anxiety. Some doctors may say off the record that they suspect scleroderma, or hint at the possibility of a vague, incurable illness of some sort.
Thus, most people have ample opportunity to be scared out of their wits, long before they have a firm diagnosis. By then, they are usually already accustomed to the idea of scleroderma, and just relieved that it wasn’t “all in their head”.
When the relief wears off, however, it usually gives way to realistic concerns about the illness and its complications and progression. For that, we urge people to focus on how to cope with stress and chronic illness.
Being ill, even with a dread disease such as scleroderma often is, does not mean that anyone needs to sacrifice their joy and happiness in life. Laughter, joy, peacefulness, relaxation, love, hobbies – they all need to be an absolute top priority for patients with chronic or terminal illnesses.
So we usually bend people’s ears talking about the necessity of becoming an expert in dealing with stress. In my experience, there is nothing better for pain or illness than living exuberantly.
Even when you literally cannot get out of bed, it is possible to savor a fine cup of tea and a radio symphony. Illness of any sort is a calling card that reminds us that our days are numbered. Rare and precious things – like life — should always be cherished.
I have a friend who does serious traveling. I’m in awe of her sanguine approach to what most of us would consider a hassle…airport delays, lost luggage, sleeping in a rain forest, and all the assorted traveler’s plagues. I finally exclaimed, “How do you do it?!” She replied, “It’s very easy. I just find something to love everywhere I go!”
One of our finest volunteers, Sherrill Knaggs, was bedridden and on dialysis for twelve years before she passed away last month. Over 400 spectacular photos from her garden decorate our story pages. Her influence on our site medical coverage was tremendous, in her role as ISN News Guide. Photos of her dialysis machine, medications, and her hands (curled and frozen like stone), embellish our site. She truly found something to love, everywhere she went, in her journey with scleroderma.
Our site has many examples to show that the sooner we can face and surpass our self pity, the better off we are. Self pity is stressful and depressing; and stress is the worst thing for scleroderma as it exacerbates symptoms and may accelerate the disease process. We have the World’s First Virtual Pity Party on our site. I threw the party for myself and my friends cured me of it with their humor.
Is the ISN a purely voluntary funded service? And how successful have you been to date in raising the money needed to fund your work?
We are an extremely blessed to have achieved astounding results through the dedication of over 75 outstanding virtual volunteers, including a world class Medical Advisory Board, led by Dr. James Seibold. Our financial supporters – such as you,– continually amaze us by avidly supporting scleroderma research, support, education and awareness.
Thus, without any offices or employees yet, we have still been able to provide the basic technology needs for our nonprofit – including our 2,000+ page web site in 22 languages, on a dedicated server. We have published 3 top notch books based on our website, the Voices of Scleroderma series. We operate very popular and stellar online support groups, 24 hours a day. We have affiliate support groups in foreign countries. And we offer toll free hotline phone support, and a membership newsletter.
Despite – or perhaps, because of – our unusual approach, we are the number 1 scleroderma web site in the world. Today our site, for this orphan disease, is ranked 102,000 out of more than 9 billion websites on ranking.com.
The momentum among our volunteers, donors, supporters and site visitors is truly phenomenal. I see an astounding future for all us, including an eventual cure for scleroderma and our ability to rapidly disseminate news about it to health professionals and consumers, worldwide.
Do you have a list of doctors that specialise in Scleroderma on your site?
Yes! We list the Scleroderma Clinical Trials Consortium (SCTC) and EUSTAR centers to cover U.S. and worldwide experts. Scleroderma is far too complex and unusual of a disease for patients to also languish – as they all too often do — with poor diagnosis, care, or treatments.
Are there any new initiatives or projects coming up in the near future that you are able to divulge to CARE.TV?
Our favorite pending initiatives are the delightful surprises brought to us by people who harken our clarion call for tackling – and eventually, conquering — scleroderma. We love small surprises too, like the woman who simply held a check-writing party for us (no bells and whistles wasted there!), or the little girl who donated her piggy bank because her mommy has scleroderma. It all counts; it all truly matters.
OK, Shelley, thank you very much for your time as well as all the rest of the your team who dedicate themselves to helping others cope with Scleroderma.
Thank you, James, for tackling the topic scleroderma on CARE.TV. We all deeply appreciate it!
Shelley Ensz
Founder and President
International Scleroderma Network
http://www.sclero.org/
7455 France Ave S #266
Edina, MN 55435
Toll Free 1-800-564-7099 (USA)
Direct 1-952-831-3091
Email: shelley-ensz@sclero.org
Warm Hugs,
Shelley Ensz
International Scleroderma Network (ISN)
