Welcome to SHIRLEY JAUQUET's Stepping Out to Cure Scleroderma Page!

My Story (2026)

I was diagnosed with scleroderma when I was 29 years old and have lived over half my life with this disease. I’m 63 years old and was evaluated for a double lung transplant in April/May. There were too many medical risks for a poor outcome, so the commitee recommended we should not pursue. God has a plan! 

My symptoms began with Raynaud’s ( blue fingers) in 1991 and my Primary Care Physician sent me to Mayo Clinic for a diagnosis. Our sons were ages 2 and 4 and I was just 7 years into my career as an IT professional. It was a game changer for us. We had just bought our first home and my husband was a H.S. teacher at his Catholic alma mater high school in Green Bay, WI. We were an active family in soccer, swimming, camping, canoeing and other outdoor activities. Scleroderma didn’t stop us, but it slowed me down considerably. 

Today both of our sons are married and we have 3 awesome grandchildren. We try to connect with them as much as possible. Our eldest son lives in Wauwatosa (John Jr.) with his wife Bri and 2 of our grandchildren, John III ( "J" age 8) and Penelope ( age 5). Our younger son Charlie lives in Denver with his wife Katie and our grandson Theo age 3. The thinner air is a challenge for me but we visit them a few times a year. 

Scleroderma affects so many things in my life. I’ve experienced all 5 of the CREST syndrome:

C - Calcinosis - my fingers and elbows- lots of Neutrogena hand lotion

R - Raynaud’s - my fingers- I have a paraffin bath to help soften the skin and warm my hands

E - Esophageal - my GERD - I sleep on a wedge pillow and do not eat after 7pm.

S - Sclerodactyly - my nails and fingers are mis-shapen and I have painful finger ulcers 

T - Telangiectasia - red splotches on my face and hands - perhaps the worst symptom because it hides who I am along with the tightening of my face. Many times old classmates do not recognize me. 

I have known that I have lung fibrosis, ILD (Interstitial Lung Disease) for about 10 years, and in the past 7 years it has worsened and I began taking oxygen at night. In March 2025 I was hospitalized for 6 days and have been on  oxygen 24x7 since then. In the past 7 years I was also diagnosed with PAH (Pulmonary Arterial Hypertension) which is increased pressure in the artery between my heart and lungs. I’m on several medications (7) to treat my scleroderma symptoms.  I have had to purchase batteries and an additional portable oxygen device (POC) in order to travel. The medical costs even with insurance exceed $30,000/year.

The amount of research and breakthroughs on treating scleroderma symptoms has grown since 1991. Unfortunately, there is no clear cause and no cure.  The awareness of scleroderma as a rare disease has also grown and now we have annual conferences, fundraisers, support groups and many educational webinars.  I connected with the Upper Midwest Support group and will again ask our mayor for a proclamation for June being Scleroderma Awareness month.  I also contacted the City of Green Bay to light the Ray Nitschke bridge teal on June 27!

We are looking forward to the June 27 Stepping Out To Cure at Timber Rattlers game with friends and family.