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Spring 2014
Volume 4, Issue 2
How To Take An Active Role In Your Care?
2014 Events
June 14: 11th Annual
Walk, Boardman Park,
Boardman
June 21: 3rd Annual
Walk, UTMC, Toledo
July 26-27: 16th
Annual National
Patient Education
Conference, Anaheim,
CA
June 26: Live Web Chat
with Cleveland Clinic
Doctors Chatterjee &
Highland, Noon – 1 pm
Aug. 2: 3rd Annual Walk,
Community Park,
Fairborn
Sept. 27: Bowl for
Scleroderma, Beaver Vu
Bowl, Beavercreek.
Oct. 3-5: 2014 State
Conference, Embassy
Suites-Columbus
CINCINNATI SUPPORT
th
Group: Meets June 14 ,
Dr. Elwing, “Pulmonary
Involvement in
Scleroderma,”
Time: 1-3 pm, Oakley
Library, 4033 Gilmore Av.
Visit www.sfohio.org
for event information.
Source: Scleroderma Center Website, Johns Hopkins
You have a chronic illness
that won’t go away.
Depending on the severity
of your Scleroderma, you’ll
be seeing more and more
specialists and need to get
the most from each doctor.
In order to do this:
Come to appointments
prepared
Ask questions – Don’t
wait for the doctor to ask
Be very clear about what
you want
Go to appointment with
written list of questions and
concerns that require
answers
cost of an office visit.
If a treatment is too
expensive, ask about
alternatives.
Discuss problems
Join Us June 14
In Boardman!
If
you can’t follow certain
advice, tell the doctor and
develop an alternative plan
Visit sfohio.org and click
thru to the event page.
Don’t be afraid to question
your treatment
Don’t be afraid to ask
financial questions
It’s your right to know the
How To Improve Your Mental Outlook
Source: Scleroderma Center Website, Johns Hopkins
“With all the changes I’m
experiencing in my body, I
feel overwhelmed and
depressed. What can I
do?”
By taking charge of your
illness, you will feel more in
charge. Having a sense of
control and having positive
things in your life can help
you cope better with your
illness and have a better
quality of life. Your illness is
only one part of your life. To
really take care of yourself
you need to balance the
more difficult parts of your
life with more positive
things such as fun activities
and physical exercise.
These will help you have a
more positive mental
outlook so you can cope
better with your illness.
Join us at the State
Conference in October to
hear Laura Hummers,
M.D., ScM, Co-Director of
the Johns Hopkins
Scleroderma Center
speak on Digital Ulcers.
(Also on same topic )
SF OHIO Virtual
Support Group
Meeting
June, 10; 7-8 p.m.
“Psychological Effects of
Scleroderma “
With Psychologist Ginny
Maril, PhD.
Dial 866-740-1260, then
enter “717091#”
To receive our monthly meeting
notice, Email: [email protected].
page 2
Cleveland Clinic
Celebrates June
As Scleroderma
Month
There will be a LIVE
web chat with
experts.
“Ask the Experts:
Scleroderma”
Soumya
Chatterjee, MD
and
Kristin
Highland, MD
June 26, 2014,
from Noon – 1:00
p.m. (EST)
Take this
opportunity to learn
more about
scleroderma and
have your questions
answered by
Cleveland Clinic
specialists.
SF Ohio Chapter Newsletter
Vaccinations for
Scleroderma Patients
From Remarks by Dr.
Robert Schilz
Improving Digital Ulcers
Source: Virtual Support Group speaker,
Dr. Lori Chung
How to help prevent digital
At our Cleveland Education
ulcers:
Day on May 3, Dr. Robert
Schilz was asked about
Improve blood flow
vaccinations for people living
Prevent Raynaud’s
with scleroderma. He
attacks – keep warm,
commented that the doctor’s
don’t smoke, don’t take
recommendations take into
meds that constrict blood
consideration the degree of
vessels
immune compromise and follow
Try to avoid stress &
national guidelines set forth by
trauma to hands that can
the American Medical
induce digital ulcers. Use
Association and the Centers for
light-weight gloves to
Disease Control (CDC).
protect hands.
You can check out the adult
immunization schedule for
vaccines that might be
indicated for adults based on
medical and other indications
on the CDC website at
www.cdc.gov/vaccines/
schedules. In addition to
information on all the vaccines,
they also offer a quiz and an
interactive tool to help you
determine which ones you
need. CDC is creating a mobile
version of the schedules which
will be available soon.
As always, consult your
healthcare professional to
determine if you need and can
safely receive the vaccine.
It is extremely important for
patients with scleroderma to
maintain mobility and to use
your hands more, to help
prevent contractures, and to
maintain strength in your
hands.
When you are actively using
your hands the blood must
flow to the fingers. If you are
exercising or perhaps after
you eat a meal your
Raynaud’s might worsen
because your blood is
shunted to your core muscles
or heart or to your stomach
if you are eating. But if you
To chat online go to:
http://chat.clevelandclini
c.org/chatpage.aspx?ch
atid=1655
How to help prevent digital
ulcers:
Join Us June 21
·
For·
Toledo Walk
Improve blood flow
Prevent Raynaud’s
registration
go
attacks – keep
warm, don’t smoke,
to www.sfohio.org.
are using your hands
actively that should help
the blood flow.
Remember to keep your
core body temp warm.
Wear hats and layers to
keep your body temp up.
If your doctor recommends
it, you can take meds that
improve blood flow such as
calcium channel blockers,
or other blood pressure
medications that open up
the blood vessels. Some
data show that statins may
also improve blood flow.
State Conference Scholarships
Deadline Extended to Aug. 22nd
Please apply with your reason for
wanting to attend the conference
related to your financial need,
medical need and involvement with
the Foundation. You must be a
current member. Include your
name, phone, address, e-mail .
Email application to
[email protected]
(preferable) or mail to: SFOH
Scholarship Committee, c/o Jolene
Rodenbaugh, 604 Chestnut Ln,
Boardman, OH 44512.
For severe Raynaud’s, ask
your doctor about Revatio
or Sildenafil.
Regarding topicals for
digital ulcers: topical
lidocaine may numb pain
but can worsen circulation.
Topical preparations of
nitroglycerin have side
effects and CANNOT be
used with Sildenafil -discuss with your doctor.
Duoderm is effective but
may not stick well to finger
tips.
SF Ohio Chapter Newsletter
page 3
Find an SF Ohio Support Group
Virtual Support Group: Meets the second Tues. monthly from 7-8 pm by phone. Call 866-740-1260, enter code
7170191#. June- “Psychological Effects of Scleroderma” with Dr. Ginny Maril.
Cincinnati Support Group: Meets quarterly, next is June 14, 1-3 pm – Dr. Elwing, “Pulmonary Involvement in
Scleroderma,” Oakley Library, 4033 Gilmore Ave. Fall meeting dates: Sept. 13 and Dec. 13. New patients and those
interested in volunteering as group leader or with questions about quarterly meeting please contact Debbie Metz (513)
232-5210, [email protected].
Central Ohio Support Group: Meets quarterly on Sat., May 3 “The Hand in Scleroderma,” July 5 “Psychological
Effects of Scleroderma,” Sept. 6 “Juicing for Better Scleroderma Health,” Nov. 1, ”Muscle Joint & Nerve Pain in
Scleroderma Patients,” from 10 a.m. - 12 p.m. Location: Villas at Glenealy Clubhouse, 6315 Donegan Way in Dublin.
Support Group Leader: Ann Barnhart, (614) 717-6790, [email protected].
Dayton Area Support Group: Meets the first Saturday monthly, April-October, 10 a.m.–12 p.m. at Grace Community
Church, 5001 Fishburg Rd. in Huber Heights. June topic: ”Muscle Joint & Nerve Pain in Scleroderma Patients.”
Support Group Leader: Penny Davis (937) 554-1425, [email protected]
Northeast Ohio/Greater Cleveland Support Group: Meets the last Thursday monthly at 7 p.m. April-Seasonal
Affective Disorder; May-Raynaud; June-Gastro-intestinal Involvement; July-Skin Disorder, Internal & External; Aug.Open format; Sept – Oct., TBD. Location: Simon’s Restaurant, 770 Chippewa Rd., Brecksville. Support Group
Leaders: Susan Woodard (216) 587-5191 and Mike Hollo (330) 241-0697, [email protected].
Toledo Area Support Group: Meets the third Thursday monthly at St. Luke’s Hospital, Room 2, 5901 Monclova Rd.
in Maumee. Support Group Leaders: Dagne Lazenby (419) 819-9605 and Jan Weaver (419) 340-9819, [email protected].
Willoughby Support Group: Meets monthly April-Sept. at Willoughby Public Library, 30 Public Sq. 10-Noon. MayPulmonary Hypertension; June-Social Security Disability w/speaker Michelle Rinehart; July-9:30-11:30, Digital Ulcers
& Raynaud; Aug.-Patient Asst. Programs; Sept.-Open Format. Support Group Leader: Larry Bodak (440) 953-2918,
[email protected].
Youngstown Area Support Group: Meets the first Monday monthly beginning in April, 5:30 p.m. in winter, 6 p.m. in
summer at Davidson’s Restaurant, 3636 Canfield Rd. in Youngstown. (330) 793-0033. Come for dinner. Support
Group Leader: Leni Schulz (330) 654-2538, [email protected].
For directions and meeting topics, please check our website (www.sfohio.org).
WE APPRECIATE YOUR SUPPORT!
Scleroderma Foundation Membership Dues & Donation Form
You can improve the lives of individuals with scleroderma and help in the search for a cause and cure. To
join or make a donation by credit card, visit our website www.sfohio.org and click the DONATE NOW
button. To pay by check or cash, complete this form today and mail to:
Scleroderma Foundation, Ohio Chapter
P.O. Box 105
Worthington, OH 43085-0105
NAME: _________________________________________PHONE: ________________________________
ADDRESS:_______________________________________EMAIL: ________________________________
CITY:____________________________________________STATE/ZIP:___________________________
AMOUNT: _____________________________________
Please check appropriate box:
□ $25 Annual Membership
□ Donation
□ In Honor Of:________________________________□ In Memory _______________________________
page 4
SF Ohio Chapter Newsletter
SAVE THE DATE!
OHIO CONFERENCE
OCT. 3-5, 2014
Embassy Suites-Columbus
2700 Corporate Exchange Dr.
Event registration:
www.scleroderma.org/stateconfoh or
mail Name & contact info with
payment ($26/person) to
SFOH, P. O. Box 105,
Worthington, OH 43085
Room Registration:
www.scleroderma.org/ohiohotel
Saturday, Oct. 4 Workshop
Speakers Include:
Carol Feghali-Bostwick, PhD,
Medical University of SC - Nature or
Nurture
Virginia Steen, MD, Georgetown
University Hospital - Scleroderma
101 & African American Issues
Tammy Gilbert, DPT, practices in
Mandeville, LA – Exercise and
Deep Breathing
Joseph Parambil, MD, Cleveland
Clinic - Scleroderma Lung
Problems
Laura Hummers, MD, Johns
Hopkins Hospital - Digital Ulcers
Karen Kemper, PhD, Clemson
University, S.C. – Author, Professor
& Patient
Nezam Altorok, MD – Univ. of
Toledo Medical Center, Research
Update
Cathy Rosenbaum, PharmD, MBA
RPh leads our Patient Panel
Caregiver’s Forum and Support
Group Leader’s Session
SFOH Board Members
Debbie Metz
Garry Lazenby
President
Vice President
Jerry Metz
Phil Meyer
Secretary
Treasurer
Dagne Lazenby
Jolene Rodenbaugh
Mariann Boyanowski
……………………….
Laurie Holden
Chapter Coordinator