This is a campaign for Gina Guerre. She and her husband, Patrick Guerre, are dear friends of mine.
It is unbelievably comforting to know the support and love we have received from all, especially the family so far separated by real estate. There is no amount of real estate that can make Gina and I feel anything less then close and togeth...er with everyone who has shared in their thoughts, well wishes, and prayers. All else is a bonus but the prior is truly what keeps us going. Thanks. Our family and friends are truly amazing and you are all here with us.
May 31'st, 2013. Gina is back in the hospital with a blood clot. Please keep her in your thoughts.
Gina has been suffering from a magnitude of problems since a motorcycle accident she was involved in on May 9th, 2001. Shortly after the accident, she was diagnosed with Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome or RSD/CRPS.
Through the years, Gina has been to many doctors and tried many treatments. None have been successful. Gina started to have throat and stomach problems in 2010 and in 2011. She was sent to a doctor from Stanford for testing and diagnosis of diffuse scleroderma. It was confirmed. In her case, because of scleroderma's effect on her internal organs, it adversly affects her body's ability to obtain nutrition from food. Her doctors fitted her 3 years ago, with a J-Tube feeding regiment which put broken down food directly into her intestines. But she continued having severe stomach problems and weight loss.
On March 23, 2013, Pat and Gina were once again at the emergency room, with Gina suffering from extreme stomach issues and more weight loss. She was down to about 80 pounds and was taken into ICU. Surgery was performed the following day to install a TPN tube (Total Parenteral Nutrition). This is a feeding system that puts nutrients directly into her bloodstream. During this hospital stay, Pat and Gina were advised that she would be lucky to live another year.
Gina was sent home, the TPN supplies arrived, and Pat was trained on how to administer them. Gina has managed a weight gain of 12 pounds in a month so far! However, Pat has informed me that her insurance company has denied the '$150.00 a day' cost for this treatment. There is still a chance to appeal this decision (and I will keep you posted). But they could be handed the bill any day for this life saving treatment.
Through all this- Pat and Gina have remained strong. But they need help...
I asked Gina and Pat for a list of what they need, and Pat sent it to me. When asked what he needed, as primary caregiver, Pat (who is an abstract painter) finally managed to spit out, "all I need is canvas for The Hearts Project".
'The Hearts Project' is an idea Pat has to make and distribute at least 10,000 hearts in honor of Gina and to bring awareness to the diseases that have devastated their lives. You can see some examples of these paintings (and other art works) on our gallery page. These original creations will also be offered as Perks for contributors to this campaign.
Any money received will be put towards these uses:
Past and future medical expenses. This includes doctor visits and other medications. Currently, they have about $3000.00 in unpaid medical expenses. But these costs will continue to climb - especially if the TPN is not covered by insurance.
Gina would like to take one vacation with Pat and her 3 kids. This is something they have never really been able to do as their kids are spread out across the country.
They need funds for upkeep and gas for their one aging vehicle - to get to and from her doctors appointments. Most of these are at least 45 mins away from their home in Cambria. She sees at least 3 or more Dr.'s per week. Wear and tear on their vehicle and fuel costs are crushing them.
They need basic living expenses so Pat can continue to stay home and give Gina the support she needs. He administers her TPN therapy, drives her to and from her medical appointments, helps bathe her, cooks meals and maintains the house. Everything needs to be as sterile as possible to help avoid any infection. They require a multitude of cleaning supplies - and perhaps an air cleaner to help keep the dust down.
They need a new mattress. Theirs is very old. With Gina's pain issues, it is nearly impossible for her to sleep comfortably.
Gina needs some dental work done. Her disease exacerbates bone issues in her mouth that have caused significant dental problems they can not afford to have fixed.
Gina, who devotes an extraordinary amount of time towards helping others with RSD/CRPS, would love to get a lap top or computer tablet. She needs something she can use in bed so she can spend a bit more time answering questions, researching treatments, and encouraging people in the various RSD/CRPS support groups she is active in. As well as recieveing support from others when she needs it.
Gina would like to get an analysis from an alternative medical doctor she has learned about.
And finally- Gina requested help getting enough funds to help pay for her cremation and memorial expenses as she does not want to leave more expenses for her family to cover.
I feel that the inspiration and love these two share, the support they have given to so many, deserves our support in return. Any help in this campaign will be strongly felt and deeply appreciated.
Gina needs to 'live out' her dreams and wants to 'out live' those dreams as well. She needs to see her daughter graduate from her RN program in two years. She needs to see her daughter have a baby. She needs to live long enough to see her son start a family of his own and have her kids live closer to each other. She would also like to see RSD/CRPS get more attention. RSD/CRPS is what broke her immune system to begin with. If more research can be done, then maybe one day they will find the cause and the cure. One day, others will not have to live through what Gina has lived with. She would like to see the awareness emege from the darkeness, so that it is as well known as Breast Cancer or MS.
Please help: Learn about RSD/CRPS and scleroderma, use the share tools to spread the word about this campaign, if you are able to - give a contribution, or even send a card in the mail to make Gina smile.
Last but not least, send your kind thoughts and best wishes to Pat and Gina and their family. Many have asked for our email address as well as our home address.
They are: email@example.com
Patrick and Gina Guerre- 2031 Green Street Cambria, Ca. 93428
May 2, 2013. It is official, Gina has managed to hit 100 lbs.
Complex regional pain syndrome (CRPS), formerly reflex sympathetic dystrophy or causalgia, is a chronic systemic disease characterized by severe pain, swelling, and changes in the skin. CRPS is expected to worsen over time. It often initially affects an arm or a leg and often spreads throughout the body; 92% of patients state that they have experienced a spread and 35% of patients report symptoms in their whole body. Recent evidence has led to the conclusion that Complex Regional Pain Syndrome is a multifactorial disorder with clinical features of neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivity or allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by an aberrant response to tissue injury. Treatment is complicated, involving drugs, physical therapy, scrambler therapy, psychologic treatments and neuromodulation and usually unsatisfactory, especially if begun late.
CRPS is associated with dysregulation of the central nervous system and autonomic nervous system resulting in multiple functional loss, impairment and disability. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.
- Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND), or algoneurodystrophy, does not have demonstrable nerve lesions. With the vast majority of patients diagnosed with CRPS being of this type, most of the literature thus refers to type I.
- Type II, formerly known as causalgia, has evidence of obvious nerve damage. Type II CRPS tends towards the more painful and difficult to control aspects of CRPS; type II scores 42 out of 50 on the McGill pain scale  (however there is seemingly little or no data pertaining to type I specifically here). In Type II the "cause" of the syndrome is the known or obvious nerve injury, although the cause of the mechanisms of CRPS Type II are as unknown as the mechanisms of Type I.
CRPS has the unfortunate honour of being described as being one of, if not the most painful long term condition, scoring 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth. Lack of social awareness has inspired patients to campaign for more widespread knowledge of CRPS and lack of clinical awareness has led to the creation of support groups seeking to self-educate with the latest research.
Evidence suggests that CRPS has both physical and psychological factors. CRPS is said to cause physiological problems (rather than physiological problems causing CRPS); whilst "research does not reveal support for specific personality or psychopathology predictors of the condition" there are psychosocial factors to CRPS (such as reduced quality of life and impaired occupational function) and psychological problems (which include increased depression and anxiety). Unsurprisingly, there overwhelming evidence of limbic system involvement. Sadly this very poor quality of life for some has led to high rates of depression and suicide amoung sufferers, which has motivated appeals for greater understanding. The AFPS leaflet on CRPS and prevention of suicide is available online here:.
Daily vitamin C has been shown to reduce the chance for the occurrence of CRPS after an injury, leading to calls for greater awareness, especially in the emergency room setting. In two placebo-controlled randomized clinical trials Zollinger et al. showed that patients who took 500 mg of vitamin C daily after a wrist fracture were less likely to incur the problem. The cause of CRPS is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site.
With the growing body of evidence persuasively indicating the progressive and systemic implications of chronic CRPS, there is concern that these patients may be erroneously also diagnosed with fibromyalgia. Fibromyalgia has a MPQ score of 35.7/50, whereas CRPS averages a 42/50 MPQ. Chronic CRPS patients would react to the pressure points of the brachial plexus, the intercostobrachial (ICB) nerve and concomitant L5-S1, injury. Similarly, when patients with multiple sclerosis were tested for CRPS, incidents of the disease was more than 50 times higher than in the average population. This has led to calls for research and more understanding of chronic CRPS symptoms which may include muscle twitching and tremors, wobbliness, falling and visionary disturbances.
As Complex Regional Pain syndrome is a systemic disease, any organ could potentially be affected. There are many internal complications which are frequently not acknowledged, "CRPS affects the systems of: cognition; constitutional, cardiac, and respiratory complications; systemic autonomic dysregulation; neurogenic edema; musculoskeletal, endo-crine and dermatological manifestations; as well as urological and gastrointestinal function".
About Gina's Scleroderma
Diffuse scleroderma can cause musculoskeletal, pulmonary, gastrointestinal, renal and other complications. Patients with larger amounts of cutaneous involvement are more likely to have involvement of the internal tissues and organs. Most patients (over 80%) have vascular symptoms and Raynaud's phenomenon, which leads to attacks of discoloration of the hands and feet in response to cold. Raynaud's normally affects the fingers and toes. Systemic scleroderma and Raynaud's can cause painful ulcers on the fingers or toes which are known as digital ulcers. Calcinosis (deposition of calcium in lumps under the skin) is also common in systemic scleroderma, and is often seen near the elbows, knees or other joints.
The first joint symptoms that patients with scleroderma have are typically non specific joint pains, which can lead to arthritis, or cause discomfort in tendons or muscles. Joint mobility, especially of the small joints of the hand, may be restricted by calcinosis or skin thickening. Patients may develop muscle weakness, or myopathy, either from the disease, or its treatments.
Some impairment in lung function is almost universally seen in patients with diffuse scleroderma on pulmonary function testing; however, it does not necessarily cause symptoms, such as shortness of breath. Some patients can develop pulmonary hypertension, or elevation in the pressures of the pulmonary arteries. This can be progressive, and lead to right sided heart failure. The earliest manifestation of this may be a decreased diffusion capacity on pulmonary function testing.
Diffuse scleroderma can affect any part of the gastrointestinal tract. The most common manifestation in the esophagus is reflux esophagitis, which may be complicated by peptic stricturing, or benign narrowing of the esophagus. This is best initially treated with proton pump inhibitors for acid suppression, but may require bougie dilatation in the case of stricture.
Scleroderma can decrease motility anywhere in the gastrointestinal tract. The most common source of decreased motility involvement is the esophagus and the lower esophageal sphincter, leading to dysphagia and chest pain. As Scleroderma progresses, esophageal involvement from abnormalities in decreased motility may worsen due to progressive fibrosis (scarring). If this is left untreated, acid from the stomach can back up into the esophagus causing esophagitis, and GERD. Further scarring from acid damage to the lower esophagus many times leads to the development of fibrotic narrowing, also known as strictures which can be treated by dilatation, and Barrett's esophagus. The small intestine can also become involved, leading to bacterial overgrowth and malabsorption, of bile salts, fats, carbohydrates, proteins, and vitamins. The colon can be involved, and can cause pseudo-obstruction or ischemic colitis.
Rarer complications include pneumatosis cystoides intestinalis, or gas pockets in the bowel wall, wide mouthed diverticula in the colon and esophagus, and liver fibrosis. Patients with severe gastrointestinal involvement can become profoundly malnourished.
Scleroderma may also be associated with gastric antral vascular ectasia (GAVE), also known as watermelon stomach. This is a condition where atypical blood vessels proliferate usually in a radially symmetric pattern around the pylorus of the stomach. GAVE can be a cause of upper gastrointestinal bleeding or iron deficiency anemia in patients with scleroderma.
Renal involvement, in scleroderma, is considered a poor prognostic factor and frequently a cause of death.
The most important clinical complication of scleroderma involving the kidney is scleroderma renal crisis. Symptoms of scleroderma renal crisis are malignant hypertension (high blood pressure with evidence of acute organ damage), hyperreninemia (high renin levels), azotemia (kidney failure with accumulation of waste products in the blood) and microangiopathic hemolytic anemia (destruction of red blood cells). Apart from the high blood pressure, hematuria (blood in the urine) and proteinuria (protein loss in the urine) may be indicative.
In the past scleroderma renal crisis was almost uniformily fatal. While outcomes have improved significantly with the use of ACE inhibitors the prognosis is often guarded, as a significant number of patients are refractory to treatment and develop renal failure. Approximately 5-10% of all scleroderma patients develop renal crisis at some point in the course of their disease. Patients that have rapid skin involvement have the highest risk of renal complications. It is most common in diffuse cutaneous scleroderma, and is often associated with antibodies against RNA polymerase (in 59% of cases). Many proceed to dialysis, although this can be stopped within three years in about a third of cases. Higher age and (paradoxically) a lower blood pressure at presentation make it more likely that dialysis is needed.
Treatments for scleroderma renal crisis include ACE inhibitors, which are also used for prophylaxis, and renal transplantation. Transplanted kidneys are known to be affected by scleroderma and patients with early onset renal disease (within one year of the scleroderma diagnosis) are thought to have the highest risk for recurrence.