Tag Archives: Raynaud’s

Spotlight: Valarie Hutchison, Support Group Leader, Green Bay/NE Wisconsin

Recently we interviewed Valarie Hutchison, one of our support group leaders! She talks about the benefits of joining a group, advice for patients and finding inspiration. She invites you to get involved if you are in the Green Bay/NE Wisconsin area. If you are interested in joining this support group or learning more, contact Valarie at hutchresource@gmail.com.

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SF: Why did you decide to lead a support group?

VH: The former leader, who was terrific, had some big changes in her life which included a move so it looked like the group would disband.  Even though I had only been diagnosed with scleroderma for about a year, I couldn’t let that happen.  When this disease was first mentioned to me as a possibility, I began to do my own research and I was terrified.  Like a lot of people, I didn’t find knowledgeable doctors locally. I did find this local support group and reluctantly went to my first meeting. I walked in to find two women who educated me, guided me and gave me their opinion that I had scleroderma (which was later confirmed at the Mayo Clinic).  At last, the chaos in my mind was quieted, and I could move forward to get a diagnosis and start treatment.

SF: When and where does your group meet?

VH: Our group meets in a lovely room with a beautiful view at the Bellin Family Health and Wellness Center at 3263 Eaton Rd. in Bellevue WI, 54311.  We meet the second Wednesday of every month from 1:00PM to 3:00PM.

SF: What do you look forward to the most in being involved with this group?

VH: The most gratifying thing for me is the newcomer to the group who is looking for the understanding that only someone who has scleroderma can give. The emphasis of our group is supporting each other and giving each other what we need. It is very free form.

SF: Aside from the support group, what resources would you recommend for patients and caregivers in your area?

VH: I always recommend the Scleroderma Foundation and Inspire.com for the discussion boards.  Both are good resources. If you don’t have your own computer, you can use one at the library, and they have people who can help you navigate the internet if you’re not a tech geek.

SF: How do you find inspiration?

VH: There are days that the fatigue and pain get the best of me.  I have Common Variable Immune Deficiency (CVID), a primary immune deficiency and, for the last two years, Scleroderma. Brought with the scleroderma was the standard Raynaud’s with the deluxe package: autoimmune thyroiditis, Sjogren’s, and, just recently, Addison’s disease.  I’m fortunate because I live alone (with my dog, Stewie) so there is grass to cut and snow to blow and everything that taking care of a home entails.  If I had someone else to do those things for me, I would not be as well as I am. I would certainly not be as mobile because I have tendon friction rubs in most of my joints.  I can be a whiner at times, but since there’s no one here to listen I have to pull up my socks and do what needs to be done.

SF: Can you tell us a few interesting facts about yourself?

VH: I’m a mother. I have two sons that are the reason I’m in Green Bay, WI.  They’re great people- the kind of people I’d want to know even if we weren’t related- and then two grandsons.  I never feel so un-selfconscious as when I’m with those kids.  They cheer me up, make me feel better no matter what.

I worked in the mortgage industry for 20 years before it became so greedy.  I felt good about helping people by putting them in the loan product back then it was quite gratifying and I miss that.

I learned to surf when I was 55 and sailed the Atlantic as first mate on a 43 ft. catamaran when I was 57.

SF: Do you have any words of advice for other patients and caregivers?

VH: Educate yourself first and foremost.  Understand your disease and your test results.  Always, always get copies of test results, radiologist reports and discs of any MRIs or scans and keep them together for the continuation of your care.  Make sure that you understand them. Go to websites like John Hopkins or the Scleroderma Foundation to learn more.  Seek out a support group in your area so that you can talk to people who really understand.  If your doctor isn’t supportive and knowledgeable go to another.

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VIDEO: Management of the Skin in Scleroderma

Lauren Graham, MD, PhD, from the Northwestern Department of Dermatology joined us in October to discuss ways to manage the skin in scleroderma patients. Topics included treatment of telangiectasia using laser lights, full coverage makeup, the scratch itch cycle, Raynaud’s, digital ulcers, and calcinosis.

Laser light treatment causes damage to the vessel and forces it to collapse and scar down so blood can no longer flow through the vessels. This can cause bruising and so Dr. Graham recommended talking to your doctor about which strength is best for you. She also noted that while a normal patient is typically happy with their results after 2 treatments, it could take 3-4 treatments for a patient with scleroderma to be satisfied. Insurance does not generally cover treating telangiectasia with laser lights, but it’s possible for your physician to appeal this decision.

There are multiple brands of makeup that offer full coverage and are recommended by many dermatologists. These include:

  • Cover FX
  • Dermablend
  • Cinema Secrets
  • Microskin (only available in New York and California)
  • MAC

Dr. Graham also discussed the scratch itch cycle and had a few tips to help minimize the effects including:

  • Keep your moisturizer in the fridge
  • Cool water compress
  • Buy fragrance free lotions and not unscented
  • Ointments are the most effective moisturizers
  • Having your doctor mix corticosteroids with Eucerin or CeraVe to lose some of the greasy texture

She specifically recommends Vaseline because it has the least amount of ingredients and is less likely to cause allergies.

For Raynaud’s Dr. Graham pointed out that some medications can make your symptoms worse. She discussed limiting your exposure to cold in places such as the freezer, grocery store, air conditioning, and while holding cold beverages. Another way to do this is by keeping gloves with you, wearing layers, using electric heaters, and not wearing cotton while working out because cotton gets cold when wet. Smoking is another trigger for worsening symptoms with Raynaud’s.

Digital Ulcers are worse when skin is stiff so it is important to keep moisturized. Dr. Graham recommended Bosentan because it can decrease the amount of new ulcers, but has no effect on existing ones. There has also been success with botox and localized digital sympathectomy. Other tips included avoiding infections, making sure your shoes aren’t too tight, and being honest about pain. Remember to visit the ER if your digits are blue/black.

Dr. Graham also talked about how there are 361 trials for Calcinosis, but many are for things other than Scleroderma.

Remember to always talk to your doctor about any possible treatments because they know what’s best for your condition.

Beat the Cold and Keep Warm!

It’s that time of year again! The weather is transitioning from the warmer summer temperatures into the colder fall and winter temperatures. This weather change tends to affect people with Raynaud phenomenon more acutely, as this can be a time of increased Raynaud flare-ups. Here are some tips on how to manage your Raynaud’s and a few products that are available to help as well!

Helpful tips to prevent an attack:

  • Avoid exposure to cold whenever possible
  • Avoid tight fitting clothing on feet or hands
  • Caffeine and nicotine cause vasoconstriction, so limit or avoid these substances
  • Avoid prolonged vibration to hands and feet, as that can cause constriction of blood vessels.
  • Wear loose fitting clothing in layers
  • Keep stress under control
  • Exercise – helps to increase circulation
  • Acupuncture – helps to increase blood flow

If an attack occurs, a few simple strategies to increase circulation:

  • Remove yourself from the cold environment as soon as possible
  • Make wide circles with your arms
  • Lightly massage hands and feet
  • Wriggle fingers and toes
  • Place hands in armpits or under warm running water to gradually warm them up

Tips from http://www.emedicinehealth.com and http://www.mayoclinic.org

Some suggested products to help battle the cold:

CoseSoles microwaveable slippers

Wristies

HotSnapZ Reusable Handwarmer Packets

FootHuggers