Bob Saget: A Life of Service to Those Suffering With Scleroderma
Note: This story was updated Jan. 25 to clarify that the $1.5 million dollar matching grant in honor of Bob Saget was provided by Scleroderma Research Foundation board members Luke Evnin and Deann Wright, not the foundation itself.
The late comedian Bob Saget sparks many memories for those of us who grew up watching the TV show “Full House.” On the show, which aired from 1987 to 1995, Saget played the character of “America’s Dad,” Danny Tanner. Saget, who died on Jan. 9, was a beloved comedian, director, movie and television star. He also was a loving brother who lost his older sister, Gay, to scleroderma.
Gay Saget was diagnosed with scleroderma in 1992 and died of the disease two years later, at age 47. To channel his grief over her death, Bob directed a made-for-TV movie based on her life, titled “For Hope.”
Bob was a staunch advocate for those of us suffering from this insidious disease. He was an active board member of the Scleroderma Research Foundation (SRF), where he helped to organize the foundation’s annual fundraising event, “Cool Comedy, Hot Cuisine,” which raised over $700,000 for scleroderma research last year. According to Scleroderma News‘ Steve Bryson, the event has raised about $25 million for research over the past few decades.
Coincidentally, Bob died on his sister’s birthday. Gay would have turned 75 this year.
In honor of Bob’s contribution to our cause, SRF board members Luke Evnin and Deann Wright agreed to match every dollar donated in his memory, up to a total of $1.5 million.
With his untimely death, I wonder whom the baton of scleroderma fundraising and advocacy will be passed to next?
Rapper, producer, and actress Queen Latifah is another celebrity whose life has been affected by scleroderma. Her mother was diagnosed with the disease in 2013, and died five years later. In an interview last year with Parade, Latifah talked about her mother’s struggles and decline in health.
“When my mom was diagnosed with … scleroderma in 2013, we’d never even heard of it before,” she told the magazine.
While I’m not a celebrity, I also hadn’t heard of the disease when I was diagnosed four years ago. Like Bob Saget’s sister and Queen Latifah’s mother, I’d gone to many different specialists to find out exactly what was wrong with me. The time it takes to receive a definitive diagnosis can be deadly.
There currently is no cure for scleroderma. Instead, we must manage our symptoms, which means that receiving an early diagnosis is crucial. Lifesaving measures could occur earlier with proper research, adequate funding, and the training of medical personnel. With continued research, new therapies could provide comforting measures for those of us who suffer from scleroderma’s debilitating effects.
Bob Saget’s death should be a personal call to all who suffer from this disease. We must speak up and speak loudly, raise awareness and funds, educate people, and tell anyone who will listen about this disease. We must be active in our advocacy.
I was having a particularly rough day when I heard of Bob’s untimely death. Sitting under a heated blanket trying to warm up my aching body, I felt like I had lost a friend.
Only a few celebrity deaths have brought out intense emotions in me. This was one of them. I fear the momentum for scleroderma advocacy and awareness may begin to wane because of it.
So, I want to take a moment to thank you, Bob Saget. While we never knew each other, because of scleroderma, our lives will be forever intertwined. Your contributions are invaluable to our bereaved community.
You used your celebrity status to honor your sister’s legacy and raise awareness, and you changed millions of lives with your efforts. Fly high, my friend. Your own legacy lives on.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
julieanna a kolankowski
having someone tell you you are not sick the symptoms do not match and you what is wrong you is a slap in the face because we all go through it we listen to our bodies and tell of the symptoms but when stanford said there was nothing wrong i felt so terrified, orphan, all alone, i went back to my doctor at san mateo and finally 4 years later got my diagnosis and doctors who listened because i made noise i spoke up. your right with out a diagnosis early on i was vomiting all my food every day not normal people, hand burned i wanted to chop them off they hurt so bad, i felt i was being attacked in the shower by needles to the point i would scream and jump out, hair fell out, fatigue, other symptoms. scleroderma patients have a great variety of symptoms it changes through time. i know what i am going through i know there is no cure but we caught it early we have to keep hope, find people who believes us, hey stanford i live with this disease it would be nice if you would listen to the patient and stop treating us like we are crazy. because of the way i was treated i refuse to go back. for those who have this disease do journaling write it all down and give it to the doctor make them HEAR. YOU
Jo
Wonderful tribute. Thank You!
SandraA Tucker
Does the foundation for scleroderma advertise or lobby in DC.? Is there a place to donate funds that is safe and actually using the money for schlederma research?
ile
srfcure.org is where you would go to donate. As a scleroderma warrior myself, I have donated over $500 from my friends and family and placed a legacy donation in my will for when I'm gone. I will also do a whole-body donation so that they can have another way to research scleroderma and its effects.
If you donate just ten dollars, that's ten dollars more than they didn't have yesterday. It makes a difference especially to those of us who continue to fight.
SANDRA COFFMAN
I am a 76 yr old white woman who has had CREST SYNDROME since my mid 30's but didn't know it because no one could figure what i had. Sometime during those years, I'd had a biopsy of my right leg because it was getting smaller and it 'kinda' hurt. Biopsy came back and I was told "something is going on there, but they didn't know what" and sent home. No big deal, , Then later during that time, I was sent to a nose, throat doctor to figure out why i had trouble with reflux. I had a procedure in the doc's office where they numbed my throat and out a tube through my nose. Doc came in and told me I had a bad esophagus, wasn't working so I needed to make sure i drank after every time I ate so food would go to my stomach. So I did that, I can't remember what he told me the name of the condition was, but there was a procedure that could 'stretch' my esophagus. I declined that. I don't know what sent me to a skin and cancer doctor, but in 1993, I went and the doctor there and he took one look at my legs and said, You have Scleroderma. I refused medication, but the doc put me in a study with 4 other patients, where students could come into our room and ask questions and take notes. I saw that doctor many times, then he retired. He used to come in from Scottsdale Az and see patients 3 times a week. I had also seen a doctor about my blue fingers, that hurt, was sent to a pain management center where they gave me a shot in a nerve in my neck to block the pain and said they could do a procedure to block the pain permanently, BUT it would make it so I would NEVER feel pain in that hand and I had to be very careful with hot water, fire, because I could do a lot of damage, but never feel it. I declined and learned on my own, that if I wash my hands often or do dishes, I could bring color and blood back. I learned to get the hand warmers that hunters use and keep in my pockets, The skin and cancer doctor explained that was called REYNAUDS. That's when the AZ doctor told me I had C.R.E.S.T. syndrome. We figured out what that I had the "T" symptoms also. That was about 1998. I moved to a rural town, had to find new doctors who didn't help me much, but didn't have any new problems until I got a severe sore on one of my legs and after trying salves, the doctor put me in the hospital an IV of pain medicine and antibiotics and it cleared up. About 2006 the sores came back, my doctor had retired and got new ones. they didn't know what to do, so for years of the doctor i rheumatologist who saw the wounds said to use the creams ad salves from the doctor was telling me to use, "that wasn't working" continually. I went to the ER because of the of pain. They sent me to wound care in my new town. Nothing they did was curing or helping, I ended up in ER in my new town again, crying because of pain and the PA asked me I had been to Infectious disease? I said no, didn't know, so he called and got an appointment the next day which was a monday. I had someone drive me because of the pain. The Infectious disease doctor called an ambulance, had them to the hospital right then. He told me later that i was dangerously close to losing both legs the tendons were on the surface. That's when I met Dr Nez Wahab, in the hospital on Jan 3rd, 2017
Marilyn
The Scleroderma Foundation should study antibiotic protocol to address Scleroderma. This protocol is giving most Scleroderma patients their lives back. Most take particular probiotics in conjunction to maintain gut balance. Please use some of these donations to study Dr. McPherson Brown's wonderful discovery last century! It absolutely works!!!