Diana & Alex Klurfeld Launch ‘Klurfeld Cares’ a New Awareness Website on Rare Diseases
NEW YORK, NY / ACCESSWIRE / June 30, 2021 / Over 100 million people worldwide live with some form of rare disease or condition. Currently, there is a paucity in the information marketplace when it comes to various rare diseases, including Ehlers Danlos Syndrome, Hashimoto’s, Mast Cell Activation Syndrome, Chronic Fatigue Syndrome, Postural orthostatic tachycardia syndrome (POTS) and several, inter-related autoimmune conditions.
Many of these diseases have their own databases and resource centers, however few are calling awareness to their collective, larger issue within the medical community: a lack of education and funding for the continued improvement of treatment, care and quest for a cure for these singularly obscure but collectively common ailments affecting millions. Alex and Diana Klurfeld are seeking to change this with their new awareness website.
About Alex and Diana Klurfeld
Alex Klurfeld is a physical therapist who operates Physical Therapy centers. Diana has worked in the health care industry for over a decade and is also a volunteer patient advocate. They’ve decided to launch an informational initiative that would compile information from around the globe submitted by doctors, caretakers, patients, physical therapists of those suffering from rare conditions.
About Klurfeld Cares
Klurfeld Outreach is a grass roots movement of individual volunteers in New York that are set to make a difference in the world for those who have rare diseases. Klurfeld Cares does not raise money or seek donations, but it does welcome articles and research that medical professionals and patients are willing to publish on the subject of rare conditions.
Klurfeld Cares has a two-fold mission. First, they are determined to identify patients’ needs that aren’t being met because of the lack of knowledge or availability of service in the health care industry due to the rarity of that condition. Secondly, Diana and Alex Klurfeld offer their resources and time to educate nonprofit organizations, medical clinics, and doctors on those conditions, advocate for those who don’t have a voice, and effect change in the organizations that are so ill-equipped to offer them the help they desperately need.
The resource database Klurfeld Cares is aggregating is only as powerful as the information provided by others. Alex and Diana’s hope is that their completed site will serve as a valuable repository or archive of information provided by doctors and patients alike on recent developments and research.
Who Does Diana Klurfeld Cares Help?
Ehlers Danlos, POTS, mast cell diseases, Lyme Disease, Thyroid Disease, chronic fatigue and other ailments are all rare conditions that millions deal with daily. There are so many other rare conditions as well. Those with these conditions often don’t get the care they need.
Those with Ehlers Danlos
There are 13 major subtypes of Ehlers-Danlos Syndrome, which affect different areas of the body. These include:
- Brittle Cornea
The most common two types of Ehlers-Danlos Syndrome (EDS) are the classic types and Hypermobility. The other types are rarer.
Symptoms of Ehlers-Danlos Syndrome
Each of these affects different parts of the body and has different symptoms. The most common and widespread symptoms are hypermobility (having very limber limbs) and hyperextensible joints (joints moving beyond the typical range; some people call this double-jointed). This symptom list may also include loose joints. They may be prone to dislocation or subluxation. Joint pain is common.
Some other EDS symptoms (depending on the type) might include severe scarring, soft, velvety-like skin, fragile skin, skin hyper-extensibility, easy bruising, and slow and poor wound healing.
Those with Hypermobility Type EDS can have chronic, early-onset debilitating musculoskeletal pain. Poor muscle tone can be a symptom of the Arthrochalasia Type of EDS. A symptom of the Vascular Type can be intestinal, arterial, or uterine rupture or fragility. Two other common symptoms are gum disease and mitral valve prolapse.
If you have EDS, you should visit a doctor. A knowledgeable doctor can diagnose your EDS based on your symptoms after ruling out a few other conditions through tests.
Treating Ehlers-Danlos Syndrome
Once diagnosed, you can also work with your doctor to develop a treatment plan. This plan might include pain medication, physical therapy, steps to protect yourself from injury, and surgery to repair your joints.
Those with Postural Orthostatic Tachycardia Syndrome
Postural Orthostatic Tachycardia Syndrome (POTS) is a rare condition involving the autonomic nervous system and sympathetic nervous system and affects a person’s circulation. There are several forms of POTS. A few of the most common are:
- Hyperadrenergic POTS
- Low Blood Volume POTS
- Neuropathic POTS
Symptoms of POTS
When a person has POTS, they develop lightheadedness, a rapid increase in heart rate, and sometimes experience fainting upon standing from a reclined position. They begin feeling better by sitting or lying down.
POTS is best managed through: diet and nutrition; close monitoring of your blood pressure, pulse, heart rate, and exercise; and a good sleep schedule.
Those with Mast Cell Diseases
Mast cell diseases are rare but are being increasingly recognized by doctors. There are three forms of mast cell disease:
- Hereditary Alpha (HAT)
- Mast Cell Activation Syndrome (MCAS)
Symptoms of Mast Cell Disease
This disease causes abdominal pain, unexplained flushing, and bloating. If you have mast cell disease, you could have severe reactions to medications, foods, or insect stings. You may also often feel overheated.
You may experience many or only a few of the following symptoms:
- Abdominal pain
- Cognitive problems
- Brain Fog
- Blood Pressure Changes with Hypotension or Hypertension
- Bone Lesions
- Weak Bones
- Bone Pain
- Nasal Congestion
Treating Mast Cell Disease
Mast cell disease must be treated in two ways. Firstly, there must be an epinephrine auto-injector on hand for emergencies in the case of an anaphylactic reaction. Use of an epinephrine auto-injector must be followed by an emergency room visit.
Secondly, those with this rare condition are prescribed medications to block mast cell reactivity so that they don’t have such a strong reaction. These medications include mast cell stabilizers, H1 and H2 antihistamines, aspirin, and Leukotriene. Some mast cell diseases are so aggressive that they require chemotherapy as a form of treatment.
Those with Chronic Fatigue Syndrome
Chronic Fatigue Syndrome (CSF) is another rare disease that Diana Klurfeld Cares helps. CFS is characterized by extreme tiredness that won’t go away regardless of getting plenty of rest, and that can’t be explained away due to an underlying medical condition.
The symptoms of CFS vary by individual and severity. However, the most common symptom is severe fatigue. Other symptoms you may experience include reduced concentration, memory loss, muscle pain, orthostatic intolerance, joint pain, headaches, swollen or tender lymph nodes, and sore throats.
To be diagnosed with chronic fatigue syndrome, the fatigue must be severe enough to make it significantly more challenging to perform your daily activities for six months or more, and the fatigue must not go away with prolonged sleep. Physical or mental activities will cause extreme fatigue that can last over 24 hours.
CFS can also cause secondary sleep problems. These include chronic insomnia, still feeling unrefreshed in the morning, and other sleep disorders.
“Getting diagnosed with chronic fatigue syndrome can be a long, hard road because it’s challenging to identify,” explains Alex Klurfeld. Firstly, those with CFS don’t “appear sick,” so doctors don’t know to screen for it. Secondly, there are no tests currently to screen for this rare condition. There are only tests to rule out other potential causes of your chronic fatigue. Once these other possible causes are ruled out, and you’re left with CFS as the one remaining choice, you’re diagnosed.
It is vital to speak to a doctor if you believe you have chronic fatigue syndrome and not self-diagnose. Several serious conditions share several similarities with CFS, such as Lyme disease, mononucleosis, lupus (SLE), and multiple sclerosis.
Treating Chronic Fatigue Syndrome
According to Alex Klurfeld, there is currently no cure for CFS. Instead, doctors treat the individual symptoms of each patient. Due to this, each treatment plan is different.
However, you can make a few lifestyle changes that can make a difference in your CFS. A few are eliminating caffeine, creating a sleep routine, getting vitamin D and sunlight, and exercise.
Nonprofit Organizations, Medical Clinics, and Doctors
Several of these people don’t have a good doctor to go to because many doctors merely don’t understand the disease. Those who do either aren’t accepting patients or are booked out for several months.
Diana Klurfeld Cares helps these nonprofit organizations, medical clinics, and doctors in several ways. First, they educate them on these rare conditions and others. These organizations, clinics, and doctors have limited knowledge of these rare conditions, and this knowledge is priceless.
Secondly, Diana Klurfeld Cares attempts to effect a change in these organizations that are so ill-equipped to care for these patients with rare conditions and offer them the desperately needed help they may not receive elsewhere. They provide volunteer services, give the patients a voice, and affect the change they can.
Alex and Diana Want You to Volunteer for Klurfeld Cares
There are not many websites out there for rare conditions. Many that are out there are for specific rare diseases, covering only a particular niche. And many of those are merely there to point out helpful organizations. This website is a valuable organization and is affecting a change. They are making a difference and making a clear call for others to help them in their mission.
They are located in Florida and New York. But you can volunteer from anywhere if you are willing to share your story. Would you consider volunteering for Klurfeld Cares? All it takes is putting your knowledge to work.
SOURCE: Klurfeld Cares
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